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kt8889
03-06-2008, 11:29 AM
Juliet,
Thank you for the good wishes. We will be leaving in an hour, surgery is at 1:45 EST. I am feeling very calm right now, I now I have many people praying for me. I will let everyone know, via my daughter how things go.
Please keep asking questions, my doctor, he is the director of the liver transplant unit here in Cincinnati, OH said that yes, 10-15% of Adenomas will turn malignant in 10-15 years,and they can rupture so be your own doctor and don't give up.
Nessie, I am sending peaceful thoughts your way for your weekend ahead.
:angel:
Katie

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kt8889
03-06-2008, 09:20 PM
UPDATES!!

Hii all, this is KT's daughter Kayla...
Early results!

We came into surgery this morning, mom (kt) was in excellent spirits and was very calm. This was helped largely by the fact that everyone at the hospital was very kind and very helpful.
We started into the pre-op stuff, her doctors started to come in to take her information and I thought I was funny... I tried convincing one that she had a cocaine addiction. :angel:
They started her on her IV's, and then we were asked to the waiting room. Our first update came when they doctors let us know they began the surgery at 2:09. We were all prepared to wait... Until about an hour later we recieved a second call to meet with the doctor.
He gave us the WONDERFUL news that rather than an adenoma that absolutely HAD to be removed, they used the 2 tiny incisions to take her biopsy.. and after all this time, it was a simple FNH (Focal Nodule Hyperplasia) that was going to be left in! Kt will be coming home today, and is doing great! I just saw her about an hour ago after surgery, I came home ahead of her. She is so so so excited that it wasn't the major surgery we have been preparing for.
Thank you so much for all of your prayers, I'll keep you posted at my mom's request.
Thank you again!

-Kayla (Kt's kid)

judybee61
03-07-2008, 09:54 AM
YAYYYYYY KATIE!!!!!!!!!!!!!!!!!! So happy for you...
;)

Judy

prudyln14
03-07-2008, 08:09 PM
Juliet,
Thank you for the good wishes. We will be leaving in an hour, surgery is at 1:45 EST. I am feeling very calm right now, I now I have many people praying for me. I will let everyone know, via my daughter how things go.
Please keep asking questions, my doctor, he is the director of the liver transplant unit here in Cincinnati, OH said that yes, 10-15% of Adenomas will turn malignant in 10-15 years,and they can rupture so be your own doctor and don't give up.
Nessie, I am sending peaceful thoughts your way for your weekend ahead.
:angel:
Katie

hi my name is prudy, on jan. 8th i had a partial liver resection for fnh and adenoma. i was very scared going into surgery but it had to be done. im still healing. i still have alot of pain. the adenoma that i have takes up the whole back side of my liver .they were not able to see this on the scan . when they opened me up thats when they discovered it . originally , i was having a lesion (fnh) removed. its size was 6.0cmx 6.5cm x6.1cm.i have to go back every 3 months for pics to see if its grown. if it has they are going to do another procedure where they go up thruogh mypelvis region to cut off the blood supply to the adenoma . they do this with metal coils. my doctor is very confident and says that as long as shes treating me it will never turn malignant. shes a very well respected oncologist , so i guess im in good hands. thoughts are with you and good luck

nessie1
03-08-2008, 08:59 AM
hello again

kt - wow so pleased mate !!!!! after all we have been discussing im just so happy for you . please post when well enough so we can catch up . our prayers were answered by the sounds of it. :angel:
I had a terrible day yesterday, i cried all day at my last day at work. i recd so many lovely emails from my work friends. We had a bit of a buffet going on in the office which was lovely as i was so hung over the day before and never ate much. Wed night me and 30 friends went outI havent drank for 4 months so it didnt take much to get me merry!! i ended up being sick all night then .so touched by everyones kind words i feel kinda lost today. Going in on tues - op on wed all being well! so glad for you mate , as you know mine is 7cm FNH but as i have symptoms i have decided to get it out! take care

Hi prudy - welcome to the post!! I have been posting on our old site fnh and adenoma. so nice to hear from someone that has had a resection done. i am very scared right now - 3 days to go and so frightened of the "what ifs". Were you very aware of your surroundings when you woke up ? did you have to go to intensive care? did you have those gross nasal tubes? how long were you in for ?? sounds like the oncologist you are seeing knows her stuff so thats great for you . keep in touch any info on surgery would be great .

juliet - hi there , not sure about the blood transfusions , or the presice location of mine. they first said it was "hanging off" the right lobe then later discovered it was a lot higher up so not sure . I too get very breathless and have back pain . I am fairly fit young slim and healthy so its a bit wierd.

take care my brave ladies- wish me luck for wed !!

nessie:angel:

kt8889
03-08-2008, 02:43 PM
I'm Back! And I am feeling pretty good today, two days after lapa. biopsy. Nessie, the best thing you can do for yourself right now, is make yourself calm! I got upset right after surgery and got very tight....you need to only focus on calming energies from here on in, ok hun?
I am so happy for the turn out. After two doctors thought I had an Adanoma, I feel so blessed. I did not have any symptoms like you Nessie, so I guess I will continue to to have to watch it and be ready to take care of it if I need to in the future.
Thank you all for the prayers. Nessie, I want to hear how you are doing whenever you get a chance.
Prayers are being sent out to everyone on here!:angel:
Katie

prudyln14
03-09-2008, 04:43 PM
hello again

kt - wow so pleased mate !!!!! after all we have been discussing im just so happy for you . please post when well enough so we can catch up . our prayers were answered by the sounds of it. :angel:
I had a terrible day yesterday, i cried all day at my last day at work. i recd so many lovely emails from my work friends. We had a bit of a buffet going on in the office which was lovely as i was so hung over the day before and never ate much. Wed night me and 30 friends went outI havent drank for 4 months so it didnt take much to get me merry!! i ended up being sick all night then .so touched by everyones kind words i feel kinda lost today. Going in on tues - op on wed all being well! so glad for you mate , as you know mine is 7cm FNH but as i have symptoms i have decided to get it out! take care

Hi prudy - welcome to the post!! I have been posting on our old site fnh and adenoma. so nice to hear from someone that has had a resection done. i am very scared right now - 3 days to go and so frightened of the "what ifs". Were you very aware of your surroundings when you woke up ? did you have to go to intensive care? did you have those gross nasal tubes? how long were you in for ?? sounds like the oncologist you are seeing knows her stuff so thats great for you . keep in touch any info on surgery would be great .

juliet - hi there , not sure about the blood transfusions , or the presice location of mine. they first said it was "hanging off" the right lobe then later discovered it was a lot higher up so not sure . I too get very breathless and have back pain . I am fairly fit young slim and healthy so its a bit wierd.

take care my brave ladies- wish me luck for wed !!

nessie:angel:

nessie-i certainly do wish you luck i was also very scared before my surgery. my biggest concern was the anesthesia, but they know exactly what they are doing and there was nothing at all to be concerned about. i was in surgery for about 3 hours i was then in recovery for another 3.i was then taken back to my hospital room , i didnt have to go into intensive care. the only nose tube i had was oxygen right after surgery. when i woke up everything was kind of fuzzy for a bit but i knew where i was. i did have an epidural for 4 days after surgery to help with pain. i also had a catheter and a morphine pump. i was in the hospital for 8 days . once i got home it was another 2 weeks before i felt close to normal. all in all it was not as bad as i thought it was going to be. it helps to have some help at home after because you will need it. my thoughts are with you and i wish you luck---prudy

prudyln14
03-09-2008, 04:55 PM
There are so many brave women on this site! It is incredible that this can be so rare yet there be so many of us. I have a couple of questions, if anyone can answer:

1-does anyone know what it means to have the adenoma right next to your main portal vein? This worries me more than anything because lots of people report to have bigger adenomas than mine yet recover fine. I get breathless a lot and the radiologist thinks this may be because of pressure on the vein?? It's odd because I do a fair amount of exercise.

2-do you definitely need blood transfusions during the surgery?

Katie, I hope you're feeling ok. It must be traumatic to have gone through all of this.

hi juliet , im new to this site but in jauary i had a partial liver resection due to a very large adenoma and fnh. my doctor said that my adenoma is compressing the inferior vena cava and portal vein. if anything she said that i would have a full feeling in my stomach because of this.i did not have a blood transfusion during my surgery. i cant believe there are so many of us out there that have this. this website is amazing----prudy

kt8889
03-09-2008, 08:59 PM
Nessie,
I am praying that everything goes well for you on Monday, check in day, and Tuesday, surgery day. Stay calm and think good thoughts. You are doing the right thing and taking care of your body, so now it is time to heal.
:angel:
Katie

nessie1
03-10-2008, 06:33 AM
hi ladies

thanks so much for the kind replies , i feel ok today just packing my things and doing last minute paperworky things. as prudy said the anesthetic is probably my worst fear. i am not going to have anyone at home when i come home. my hubby starts work at 6am so i am still going to have to get my son ready for school every morning and my friend will pick him up. i will at least have all day to myself until he comes home from school at 3.30. Not quite sure how i will cope but i guess im going to have to . I am a bit of a control freak when i comes to doing things myself but i guess im gonna have to learn to just chill!!once again thanks so much , its great to have the support .

i will post tomorrow before i go

:)

kt8889
03-10-2008, 09:51 AM
Nessie,
CALM, CALM, CALM...No more worries....what ever is going to happen will happen. You have good friends around, they will help out. Don't worry about the anesthetic, that was my favorite part, I am remembering more about waking up and it is no big deal, they wake you up slowly and honestly, the sleep feels so good, I slept all weekend with my pain pills. ;)
Please, just find a peacefulness, I was all worried and by surgery day I was so calm and it was a blessing, you can do it, I will keep praying for you! :angel:
Katie

bethegk7
03-10-2008, 01:54 PM
I am new to the message board. I have known about my liver tumors since 8/06. At first the doctor thought they were FNH. When I went in for my annual ultrasound it appeared the tumors had grown. I was shipped off to a specialist who did a needle biopsy and determined that at least one of the three tumors is an adenoma. My biggest one is 6cm. I am scheduled for surgery at the end of May and I am scared! I need to have my left lobe removed and possibly my gall bladder (not sure why). I think the surgery and the post-op scares me the most. It is good to have this message board!

kt8889
03-10-2008, 02:04 PM
Welcome bethegk,
You have come to the right place...Nessie is going in for surgery and re-section today. It might be a while until she can post, but she will in a week or two when she is able.
There are many woman on here that that been through what you are going through, or are going through it now, ask any questions and we will try to help as much as possible.

Katie

LindaG40
03-10-2008, 03:31 PM
Hello everyone! I had been traveling for work and then a friend's wedding all last week, and so much has happened during that time! I'm glad I found the new posting and was able to see the great news about KT. Congratulations! :D Did they remove anything at all? What is the plan now?

Nessie, good luck to you. You are in my thoughts and prayers, and I hope everything goes smoothly. Just remember to stop and take a deep breath when you start to feel a lot of anxiety build up. :angel:

Welcome bethegk7! Everyone on this board has been so helpful and kind and understanding. It's good to talk to other people who are going through the same thing. There's not a lot of information on these things, so that makes it harder to explain to family and friends. Don't be afraid to ask anything (and I mean ANYTHING). As I said, everyone here has been very helpful.

I can't remember if I gave my latest update, so here it is again. I had a follow-up CT on 2/4/08 (my surgery in Dec was cancelled), and they now say that I have two hepatic adenomas: 3.5cm on the left side and 2.31 on the right side. The one on the right ruptured back in May '07, so the hematoma from that is still there, but much smaller. They don't know how big it was before it ruptured. My surgeon said to stay off the birth control pills, which I have since my trip to the ER back in May (I now have a diaphragm) and come back in 6 months for a follow-up CT.

I received a call from my surgeon a couple of weeks ago, and radiology looked at my scans again in their monthly review meeting. Now they want me to come back for an MRI on 3/18/08 so they can look at the one on the left. My surgeon didn't know what they think it is or what it could be, which is why they requested the MRI. I don't know what to think about all this, so I'm just going to wait until I get the results from the MRI. I honestly haven't told any of my friends or family about this because I don't want to upset or worry anyone. Also, since I don't have any answers myself, I don't want to deal with all of their questions since my response will be "I don't know". My mother thinks that I've been holding out on giving her information anyway, but this is one of those things that not a lot is known about, and I can't seem to get her to understand.

That's all I have to report for now. Again, good luck to you Nessie. If I lived closer, I would offer to help you out when you get home from the hospital! Congrats again to KT on the great news! What a relief!:)

LindaG40
03-10-2008, 03:38 PM
Just to respond to the questions about gallbladder removal and blood transfusions:

- During my appointments with my surgeon, he said he might have to remove my gallbladder, depending on the location of everything else. He said I would be o.k. without it, and that it's something we needed way back in the day when we were hunting in the wild and needed to process the large amounts of protein we consumed. Now that we've evolved and have more nutritional options available, it's not as necessary.

- I had donated two pints of my own blood to be used in my surgery, in case a blood transfusion was needed. My surgeon recommended this, and a friend of mine who is a cardiothoracic surgeon also said it's the best thing to do.

kt8889
03-10-2008, 05:00 PM
Hi Linda,
Welcome back, no surgery was done on me accept for the laparscopic biopsy. I am still a little sore today, but only taking advil and getting some work done, so I feel blessed. I never had any symptoms, so I believe we will be doing follow up scans to keep an eye on my FNH, unless I feel pain. I meet with my surgeon next week, so I will fill everyone in.
I heard the same for the blood transfusion. I had two units on hold for me during surgery, in case they were going to do a re-section. If you donate your own blood, it has to be done 4 weeks before surgery and it will be thrown away if it is not used.
Keep us posted, and prayers to all, :angel:
Katie

angiebay31
03-11-2008, 02:31 AM
Hello Ladies. I am new to this board. I am 31 years old and just got my mri results back and they think it is fnh. They say that they are going to do a biopsy to rule out cancer. But they think it is fnh. The tumor is 7.4 x 7.5 cm. It goes anterior to posterior. The doctor told me to prepare for a surgery!!! Not sure why. Is there a reason to remove it except for fear of it rupturing? I have read where some ladies tumors have ruptured, how do they know that? and is it life threatening when it bursts? Just trying to figure out if surgery is right for me. I have a 12 year old, a 5 year old and a 3 1/2 month old baby, so for me to have surgery is like a major undertaking!!! They found it when I was 7 months pregnant while giving me an ultrasound. I have SEVERE headaches that I have never experienced before. I have one EVERY SINGLE DAY. the dr. gave me vicodin to ease the pain, but I cannot take it because I am breastfeeding, so I have been living with these headaches that are almost debilitating. Do any of you ladies also have headaches? Is that a common side effect of FNH? Any advice would be greatly appreciated. It is so awesome to have found this board. Congratulations Katie, that is phenomenal. Thank you so so much!! Angie:confused:

nessie1
03-11-2008, 06:54 AM
morning all ,

well todays the day , im leaving at about 13.00. surgery is planned for tomorrow. i have just come back from the school run with my son- saying goodbye was the hardest thing i have ever had to do. the look on his face was so sad, he never cries going to school but did today. i will miss him so much whilst im in hospital.
angiebay31 - hi there , mine is a FNH 7cm like yours. i also have very bad headaches, not sure if its a symptom . i cant eat properly and have lost quite a bit of weight. i dont seem to have any room in there ! i also have a dull ache in the back and occasional burning pain . mine has heamorraged once already which was worst pain than childbirth!! - hence why its coming out .

once again thanks for all the lovely replies, i will post as soon as im able - keep the prayers coming please.

thanks

nessie

kt8889
03-11-2008, 11:28 AM
Prayers are being sent out to Nessie, :angel:, you are 6 hours ahead of me, so I just keep praying, not sure what time you are in for surgery.
Angie, welcome...you need to make sure you have a talk with your surgeon about what you need for YOU right now. He wants to do a biopsy, most likely because he is not sure what your tumor is. I had two doctors say mine was 90% an Adanoma, but honestly, they just can not tell on some of us.Mine turned out to be FNH and our plan was to leave it in there if it is FNH.
Have a plan for everything, Adanoma...remove it, but let's wait a year for the baby...FNH, leave it in, unless it becomes a problem......there are many options, but you need to make yourself very clear to your surgeon about what you can do right now.
I do get headaches, at least one or two a week. I never heard they are connected to FNH, but I do not think much research has been done. Honestly, I think the pill made mine worse, because I have been off for two months and my headaches have gotten better.

LindaG40
03-11-2008, 03:01 PM
Angie: mine are adenomas, so I had no symptoms at all until one ruptured. Thank God the bleeding was contained within the liver, otherwise things could have been much worse, as I've been told by my hepatologist. For me, it started with pain in my right shoulder, which I attributed to being yanked by the dog I was running with. I also felt a lot of gastric pressure, and then there was pain in my right abdominal area too. The pain was so intense that I went to the ER, where they saw the bleeding on an ultrasound. It wasn't until a couple of months later that they saw the adenoma on a follow-up CT. Now I'm waiting to do an MRI so they can get a better picture of what's going on with me.

I was told that there is a risk of these growing and rupturing during pregnancy, but it sounds like you did not have that problem. It might be more of a risk with hepatic adenoma than with FNH. Make sure you ask a lot of questions, and if you need help coming up with a list, just let us know. Good luck!

My thoughts and prayers are with you Nessie.:angel:

angiebay31
03-11-2008, 04:55 PM
Hey ladies, Thank you for replying. I tt the dr today and I am supposed to go to st louis next wed for a biopsy. What all does that entail? will i be sick afterwards? Thank you for all of your responses. I really appreciate that. Good luck Nessie!! I will be praying for you. Angie :angel:

bethegk7
03-12-2008, 10:09 AM
Angie, I think we have all been there in one way or another. These lovely little tumors are hard to pin down unless you have a biopsy or surgery. I was originally told mine were FNH. Fortunately, my doctor was not 100% comfortable with that and wanted to keep an eye on me. I went in for my annual check up this January and my doctor wanted to do one more ultrasound before sending me on my way (I had not had pain since Aug. '06). The ultrasound indicated that the two of my three tumors had grown a fair bit, which alarmed my doctor. I have not been on the pill since 2004 or 2005. I had a mirena IUD in but had that removed in Nov. of 06 because of the tumors. So, by all counts the tumors should have stablilized or shrunk. My doctor packed me off to a surgeon who immediately did a needle biopsy. That was entertaining. I had it done in his office (rather than by radiology which would have required being admitted to outpatient care -- which would have allowed a sedative etc...). It was not a great experience -- I would have preferred a sedative the local was ok but my anxiety was through the roof. Afterwards, I just felt this bizarre discomfort/pain as if my abdomen was filled with air. I went home and slept! I felt much better the next morning, just sore in the URQ. No lifting for a week and that was that. Turns out that the biggest tumor is an adenoma (and we are assuming the other two are as well). Even when I thought it was FNH the recommendation was to have the tumors removed if they were over 5cm because of the risk of rupture. Adenomas have the added bonus of becoming malignant. I was floored when the doctor said he had to remove the left lobe of my liver and my gall bladder. I thought the tumors were ON my liver not IN my liver. You need to find out what they are and deal with them. Surgery is never convenient but your chlidren need you healthy!

My thoughts are with Nessie!
Beth

kt8889
03-12-2008, 10:58 AM
Hi Angie,
Beth let you know what a needle biopsy is like...I had a laparoscopic biopsy done last Thursday. I checked into the hospital, they put me under, thank God. ;)
My doctor filled me up with air, made two incisions, one for a camera and one for needle. I took about an hour and then we were done. My doctor thought it was an Adenoma, so he was going to keep operating and take it out if is was anything but an FNH. My tumor is 9 cm, and he always has told me, no matter what size a FNH is, he will leave it in, unless it is causing pain and I have never had pain.
Do you know what kind of biopsy you are going to have? Keep asking questions, as we all said, someone one here has been through what you are going through, we are glad to help.
Prayers for Nessie.... she is having surgery today! :angel:
Katie

kt8889
03-13-2008, 10:42 AM
hi Juliet,
I love how this board brings women together from all over the world also. We can learn so much from each other! :D
I have a question...did a surgeon go laparscopicly, and see your tumor? Please try to keep in mind that without a biopsy, they don't always know what they are looking at. I have never heard of one being in-operable, but I would keep asking questions, keep researching, and I will keep praying that you find the answer. I have read that many women on here have their gallbladder taken out with their surgery, so that is common.
Sorry, I don't have answers, all I can do it give you a hug from the other side of the world and keep praying for you. Maybe someone else might have an answer, there are some women that have been dealing with this much longer that me.
Hang in there,
katie

LindaG40
03-13-2008, 03:06 PM
Juliet,
The first thing all of my doctors have told me was to stop taking birth control pills. I had been on the pill for almost 20 years, so that is what probably contributed to my adenoma growth. You should let the liver specialist know that you are still on the pill. I am 41, no children, so I had to switch to a non-hormone birth control method.

Have they done any blood work on you yet? I would think that those tests should help them to understand if this is cancer or not. I have been told that mine are benign, but there is still a very low chance that it can become cancer. I did not know I had them until one ruptured last May, and there's no way of knowing how big it was before the rupture. The first time they saw it on my follow-up CT in July, they said it was 5cm. The follow-up CT in August showed the same size, but then I had a CT in December, two days before my surgery was scheduled, and the surgeon said it shrunk, so he cancelled my surgery. I had another CT in February, and he said there are two, and he's not sure if one shrunk or if the hematoma from the rupture had distorted the view. I have an MRI next week so that they can get more information. I still have not had a biopsy, but that might be because they were going to do surgery.

Unfortunately for us, there isn't a lot of information on these. I have done searches on Medline and spoke to different physicians about them (I am in pharmaceutical sales, and dating a surgeon), but not much is known. If you have the time, read through some of the previous posts on the FNH thread (it's now closed for replies). That's where you will find what other women have experienced (and how we all found each other).

I did have a dream (nightmare?) last night that my adenoma ruptured again! It was horrible because I was trying to get myself to the ER, tell them to get me up to UCSF, and letting family and friends know where I was. The pain (in my dream) was so intense that I woke up, so now I'm wondering if I had some cramping last night that caused this. I feel tightness in my right side every once in a while, usually when I do my power walks. The pain is nothing like when it ruptured, but enough to remind me that it's still there. Does anyone else still feel pain or aches from theirs? What does your doctor say?

bethegk7
03-13-2008, 04:03 PM
Hi Linda,
It is funny you mention the pain. I often have some pain (not as bad as when I went to the ER) but I often think it is phantom pain --I think that I think about my liver so hard that it hurts. I just assumed that I am being paranoid. My doctor chuckled when I told him. I have somewhat jokingly told the people that I work with that if I every suddenly pass out that they need to make sure they tell the ambulance that I have liver tumors that probably ruptured and that I am bleeding internally!

It is not surprising, at least to me, that your tumors shrunk. My surgeon typically waits for 6 months after a biopsy and the cessation of birth control to do repeat tests as some tumors shrink once you stop taking birth control. Unfortunately for me I stopped taking them ages ago and had my IUD removed immediately after discovering my tumors.

Juliet, I am surprised that you doctor has not suggested you stop taking the pill. I think one of my tumors is sitting on my gall bladder which I assume is why my doctor wants to remove the gall bladder so that he can get clean margins. My surgeon (almost gleefully) poked a needle into my adenoma. I think he was mildly worried about doing that in that he made me hang out for the afternoon to make sure that I was not bleeding. Getting a sample or removing the tumor altogether is the only way to determine absolutely what the tumor is. These is a lot of similarities between FNH, adenomas and some types of liver cancer. Blood work should identify very reliably if you have liver cancer. Your AFP (alpha fetal protein) levels would be out of whack if you have cancer. Also, your liver function tests would indicate a problem.

I hope Nessie did well!

Beth

kt8889
03-15-2008, 11:39 AM
Hi Juliet,
It sounds like you are doing your research and staying on top of things. Most likely, your liver surgeon might want a biopsy and go from there. I will keep you in my prayers...please let us know what how things go.
As for the boyfriend....I felt the same way you do. Our livers are always on our mind...no matter what we do, and our boyfriends are there, more than anyone and hear every detail. I did not want to vent to him to much, but at the same time, he is the one that is always there for me. My boyfriend is very supportive and always let me vent, but I tried not to talk about it everyday. My BF did go with me to all of my appointments, so that helped him to understand what was going on. As for being a care giver, after surgery, I told him I would take my mom over him any day. ;)
Happy St. Patrick's Day everyone!
Katie

kt8889
03-15-2008, 10:50 PM
You are so welcome Juliet.....hang in there, make a list of questions for your doctor and go through each one with him or her. There are a couple of threadss about FNH/Adenomas on here, if you have not read through them, take some time to read them and write things down, that is what I did and it helps so much. I think doctors like it when we educate ourselves. Let us know how it goes.
And yes, moms are the best, no matter how old we are. ;)
Prayers are being sent out tonight for answers at your appointment. :angel:
Katie

kt8889
03-17-2008, 10:28 AM
Hi Juliet,
Well,bless your heart, you might not have gotten all the answers that you wanted, but it sounds like you have a good direction. Your tumor is in a bad spot, so they are not going to biopsy....and the fact that it is in a bad spot, you need it out, and I think the biggest reason, is if you want to have kids. If I remember correctly, you are young, so you will recover well and easily. What did your mom think and your boyfriend? I think you are being very smart to go talk to another doctor, but I think you know the direction you need to go, just pick the time and how you want it done that works best for you. (If that is possible)
I will keep praying that you find the right answer! I have my follow up appointment with my doctor this Wednesday, so I hope all goes well there.
Thanks for the update,
Katie

bethegk7
03-17-2008, 01:00 PM
Hi Juliet,
Sorry to hear that...but clarity is better. Sounds like you and I are in the same boat. My tumors are near my portal vein but I do not think they are resting on it. The left lobe, a bit of my right and my gall bladder are slated to be removed on May 28. The whole process overwhelmed me and I did not get a second opinion. My father is a retired physician and he concurred with the surgeon so I punted. Some how hearing your case makes me feel like I am doing the right thing.

I read (I think on the thread that is now closed) about the incisions that are made. I am not looking forward to that. I keep joking with my husband that the days of me wearing a bikini are behind me (ok so I have not worn a bikini in a decade or so but this means I really am done with belly bearing!). I am terrified about the whole process. I keep thinking of Nessie and hoping that she is doing well.

Good luck on Wednesday, Katie.

Beth

nessie1
03-18-2008, 07:08 AM
WELL HELLO THERE LADIES!!!!!!!!!!!!!!!!!!!!!!!!!!!!

IM BACK !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

firstly thanks so much for all your prayers - they worked -my guardian angel was def looking over me . Came home last night. Had the large tumor part of right lobe and gall bladder removed. All went well , wasnt supposed to come out until wed but im doing so good i came home early. Lovely to read all your posts-we are an amazing bunch!. I will get the results of the large 7cm tumor and the small ones in 3-4 weeks time - i have also asked for a photo of it - well i did grow it!!!! surgeon pretty sure was FNH but as i have symptoms the right choice was made. the small other 4 on left lobe are staying put as so tiny and could not remove all without transplant!!

I went into surgery on wed at 9am, hubby came in and watched me go under. i was back in recovery at 11.00am. i had epidural in for 4 days so no pain. i was in high dependancy unit for 2 nights. i had a big problem with my blood presure dropping and my sugarlevels were incredibly low but i just was out of it most of the time. I had a gastric nasal tube emptying contents of my stomach for about 6 hours then i needed that out as was so gross. I had a central line into the neck which came out on sunday and 5 other drips in the arms so im all holey! The epidural came out sat, unfortunately the pain killers did not have time to take effect before the epidural ran out so i was fairly ill on saturday and needed lots of morphine! by sunday i was able to cope with the pain and have some food. The drugs are great!! feel very floaty!! have an pressure ulcer on my foot which hurts more and the nurses are more concerned about that! - district nurses are visiting daily. The surgeon usually uses staples but as im only 32 he still wanted me to have a reasonably nice tummy so he didnt use them and has done disolveable stitches. the scar is about 8 inches going along right hand rib up to sternum.

anyway im so tired need to sleep now, any questions pls shout, im so glad its all over and i made the right choice. thanks so much and i hope all is well with you guys. Juliet - from what i read it sounds like surgery is recommended for you?? please just ask me for anything you need to know and i will do my best .
i will post tomorrow.
by the way - my hubby cant believe how much i do at home and he has had to do everything!! - finally he realises!!!!

;)

xx

kt8889
03-18-2008, 11:14 AM
NESSIE!!!!! I am so glad you are feeling good... and you are home! It sounds like you did well, I told you the drugs part was the best, and you got many more drugs than me. haha We are soooooo proud of you for getting through that, now, you need to make sure you do not do to much at home. You are to stay in bed and I do not care how messy the house is and that is an order. ;) Honestly, as you get feeling better, it is hard to stay put, but please try, I just now am starting to feel like myself and I just had a biopsy. You are a strong woman...god love you!
Juliet, I saw your other post and I did search Albumin, it says many things, including liver disease. I know you are worried, and I have no words of wisdom, all I can do is pray, and thank god that you found it and you can schedule surgery. Please keep us posted, I know you have another appointment at the end of the month.
Beth,
Our girl is back from the hospital, ask away...she can tell you all about her surgery, although, I think they kick you out of the hospital sooner here in the states, everything else should be about the same.
Nessie, welcome home! I am so pleased you did so well, take care of yourself!
Katie

bethegk7
03-18-2008, 03:59 PM
Nessie -- congratulations! I hope that you are through the worst of it. I have a million questions but will wait until you are a little further out. I have heard that the epidural is the way to go in regard to pain management while you are in the hospital. I am dreading the nasal-gastric tube. :( I figured that in the states they would throw me out of the hospital after a couple days but my surgeon said I would be in for a minimum of 5 days. That is a really long hospital stay for the US! It is good to know that Nessie came home in 6 days!

Juliet what is low on your albumin?

Good luck tomorrow Katie.

Beth

nessie1
03-19-2008, 05:55 AM
hi again

thanks for all the replies - its so good to have you guys
katie - i will obey your orders and rest dont you worry - it is hard as i hate being a burden but i guess i got to just accept it for time being. the district nurse is coming out today to change the dressings. all is good today - feel very positive. good luck today seeing surgeon and im glad your feeling ok

juliet - take care hun , try not to worry , im sure you will be just fine. these liver tumors are all about the waiting game which is so hard but just try and stay positive. :angel:

beth - hi there - when are you going in hun? is yours a adenoma? dont worry about the nasal tube mate, you are so out of it you dont really realise. the good thing is i when i felt sick they just put a syringe in the end of it and sucked out the contents of stomach and hey presto - no more nausea! they put it in whilst you are asleep and it doesnt hurt coming out. epidural is great however i did get the common side effect of major shakes which was annoying. my legs were also numb which i didnt want as i now have a groovy bed sore on my foot!no pain whilst on epidural just make sure they dose you up with painkillers for about a day before they stop the epidural as it is a bit of a shock at first! at least with epidural you can sleep, you will have a catheter in also. please dont worry about it . if i can do it anyone can!! i was told 7-10 days in hospital but once you can cope without any intravenous pain support you can go home. pleas fel free to ask away mate.

take care all, dont know what i would have done without this post, i have found it so supportive in a very worrying time.

nessie x

bethegk7
03-19-2008, 10:15 AM
Nessie, Thanks for your willingness to answer what is likely to be a long string of questions. I am scheduled for surgery on May 28. I have three adenomas in my left lobe. Well one is an adenoma and we are assuming the other two are as well. I am a visual person I guess and want to visualize what I will be going through after surgery. Some how that calms me a bit -- I don't like the unknown. I am worried about the epidural as I had a bad reaction to the spinal I had when I had my c-section. I vomited for 12 hours and itched for another 12! I am hoping that the doctor can use a different medication in the epidural. It is good to know you don't notice the nasal-gastric tube. My doctor said it might be in for up to 24 hours. Yuck. I have a phobia of tubes in me...catheters, ivs...really looking forward to this!;) How quickly did they get you out of bed? Did they have pressure socks on your legs to keep the circulation going (on not...since you were numb and have a bed sore)? How are you feeling now...each day better I hope! Make sure to rest. Your body needs time to adjust! I have heard that fatigue is the hardest part of having a portion of your liver removed!

Juliet, sorry I meant what was the number of your albumin?

I hope Katie has good news today.

It is dreary and cold here! Beth

kt8889
03-19-2008, 10:16 AM
Hello all!
If it is possible to tell how someone is feeling through post...Nessie, you sound great. I love how upbeat you are. I am sure you are going to make many women feel much better about surgery now and in the future, I love it.
Juliet, If it makes you feel better, we found my FNH from routine blood tests. My Alkaline Phosphatase Level was 311 and 415 in two different tests. Normal is 35 to 150...needless to say, I was freaking out, but look where I am! Now, I know you are going towards full surgery, but just remember our livers are just reacting to what is going in with them, stay positive hon, it is good for the body and soul. But we all understand what you are going through right now, I am so sorry, can't wait for Friday to come for you to get some more answers.
Well, I get to go for my follow up today, so I will let everyone know how it goes.
Beth, when is your surgery scheduled for again, is it May?
Prayers out to all this morning! :angel:
Katie

kt8889
03-19-2008, 10:49 AM
Juliet...what time is it over there? So funny you say good night and I am just starting Wednesday.....
So glad I could help love, I don't know what I would have done without this board.
Sleep well!
Katie

nessie1
03-19-2008, 12:29 PM
hi again

juliet - please dont worry hun , it is a very lonely time i totally understand but remember we are all here to help where we can. My bp fell to 67/37 and my sugar levels fell to 1.7. to be honest i just felt like everything was kinda slow? the epidural was creeping up my chest instead of staying at my diaphram which was not helping my breathing. they reduced my epidural meds and pumped saline and some sort of orange liquid in me - sorry dont know name but i can find out. i do have a low bp anyway and it naturally slows down after surgery. once the epidural meds had been reduced and they gave me some sugar i perked up. i was asleep most of the time. you are not really aware of what is going on so please dont worry you will be in safe hands. i dont know what my bloods were like as i was told originally they were all fine.

beth- i too had intense itching with epidural - i have a lovely rash at the moment! shakes are a common side effect and it was quite hard to get the balance right as to where the block was. sometimes it crept up too high and other times i couldnt even wiggle my toes! - but hey no pain!! I had lots of anti sickness meds as im always sick with anesthetic - but i wasnt sick once. the last thing they want is for you to be sick and the nasal tube actually reduces the nausea - pls dont worry about this - that was my biggest fear before surgery as i thought i would be gagging but it was fine. i had lovely bed baths for the first 3 days and sunday(day5) once epidural and catheter was out i was able to get out of bed. some surgeons want you out sooner just depends if you can feel your legs. i did wear pressure stockings but obviously never worked on my one foot! the nurse said today the circulation should return but may not be back to normal until the summer! In hospital i slept loads and its quite uncontrolable but since i have been home i have managed to stay awake all day and get lots of nice sleep at night. i feel great today. the wound is sore but i feel brill. the worst thing is trapped wind pain and i still havent passed a number2!!(sorry to be gross). they are threatening me with laxatives now so i hope i go soon!!i really cannot believe i worried so much. all the "what ifs" . i dont know how old you or juliet are but im nearly 33 and the surgeon said age is on our side and the recovery rate is much quicker. i take 12 painkillers a day and 1 anti acid. can walk upstairs . My hubby has just washed my hair for me - feels so nice!!


please please try and stay positive. i cant stress enough how worry can make you more poorly. any questions pls just ask.

xx

LindaG40
03-19-2008, 01:45 PM
Hello Ladies!

Congrats Nessie on coming home from the hospital. It's encouraging to know that you are feeling well and that you made it through everything without any trouble. One of the side effects of pain meds is constipation, so you might want to try a laxative, just to feel better and help everything work its way out.

Juliet, I think you had asked me about being a drug rep, and I forgot to answer. I used to work for AstraZeneca in the respiratory group, then another company selling birth control pills (there was NEVER any talk about the liver, only blood pressure and smoking), and now I work for a company called Reckitt Benckiser. We have a product called Suboxone that is for the treatment of opioid dependence.

I had my MRI yesterday, but it will be a few days before I get the results. I'm starting to get nervous again only because my surgeon said the radiologists weren't sure what the growth was on my left lobe. Last summer, when all of this started for me, my CT results went from one adenoma, to several, back to one, and now the count is at two. I had bloodwork done in December, but they haven't run any tests since. I haven't told any of my family or friends about the MRI, with the exception of my housemate and you ladies. And I didn't tell my housemate until last night, after returning home from the tests. When she asked me why I kept it to myself, I told her it's because my surgeon didn't know what was going on, therefore the answer to any question would be "I don't know". I haven't felt any pain in my side for a while, but that could be the result of the hematoma going away. Again, I don't know.

I do have a question for everyone. Have you ever had any severe itching of your skin prior to your diagnosis? Last night the front of my calves were itching like crazy, and I recall this happened to me a lot a couple of years ago. I went to my GP, and he suggested OTC allergy meds, but I was already taking them. He then recommended changing my soap and lotion, but that didn't help either. A gynecologist said it was menopause, which was scary to hear two months prior to my 40th birthday! I thought I read somewhere that this is an indication of something going on with hormones. If anyone has a thought on this, let me know.

Hang in there everyone, and don't be afraid to turn to this thread for help and support. Please know that we are all together in this, and standing by each other in love and spirit!:angel:

kt8889
03-19-2008, 02:27 PM
Hello Ladies, I am back from my follow up, and news was not good....I had a feeling. The final pathology report came back and it turns out my FNH is really an Adenoma. I am feeling numb right now, I am so sick of this roller coaster I am on....I was not ready for that news today. I do not have a surgery date yet, his nurse will call me, but I told my surgeon, lets just get this over with, so I think it will be in three weeks or so. My surgeon felt bad telling me the news, he said he is going to try very hard taking it out laparscopicly, but no promises.
Linda, good to hear from you and so sorry you are frustrated too.
I will write more when I learn more, right now, I am just sad.
Katie

bethegk7
03-19-2008, 04:25 PM
Katie, I am so sorry. You really have been through the ringer. I wish there was more to say other than I know to a certain extent what you are going through. I have found chocolate and wine to be helpful! :)

Nessie, I am feeling old here at 39. I feel like I hit 35 and started to fall apart! Wow, they let you out of the hospital without having a bowel movement (BM). My surgeon said the focal point of my stay at the hospital will be the all important BM. Everyday, at least 5x per day, I will be asked if I have passed any gas. Once I start to pass gas, they will want to know if I have had a BM. Once I am in successful in that category I get to go home. Pain medication does make you constipated -- you certainly should take a stool softener and a probably a laxative. I am worried about dumb things like my hair. I have long thin hair. I don't know if should cut it short or get it braided....how silly is that.

Linda, I have itchiness but I have psoriasis which is flown blown at the moment given my stress. My weird symptom is I rarely get pain, but when I do it is associated with my period. I rarely get my period so that is good. I find it odd that the two are linked. However, the bad news is that I am having my period for the second time this year (very unusual) and so I am having my second round of pain. I am hoping I can make it to May 28!

Juliet, the only difference in numbers seems to be a decimal -- our range is 3.6 to 5.4. From what I read there are a lot of variables that can make that reading go low. If the other liver function tests are ok it probably is not a serious indicator! This is all a crazy bit of business.

I am grateful to have a group who understands!
Beth

LindaG40
03-19-2008, 06:38 PM
Is your adenoma benign? They usually are, so that's one positive thing. Mine is an adenoma as well, but my doctor was very reassuring right from the start. I know that surgery is the only option to remove these, and your bikini-wearing days might be over (unless you can get a plastic surgeon to help you out), but the good thing is that once it's gone, it's gone. The liver is an amazing organ in that it will re-generate, plus you get to eat a high protein diet. I hope you're not a vegetarian!

I know the news was not what you wanted to hear.:( But you are healthy otherwise, right? The best thing you can do for yourself now is to prepare for surgery and be strong physically so your body can heal quickly. We are all here for you too.:angel:

LindaG40
03-19-2008, 06:42 PM
P.S. Has anyone tried milk thistle? I heard it helps with liver function, but does it help with adenomas or FNH? Post op? I keep forgetting to ask my surgeon. Put that question on the list!

kt8889
03-19-2008, 10:01 PM
Thank you Beth for your reply....I know you all understand the up and downs of all this. This has been a roller coaster of emotions, but we will make it through. My boyfriend was so upset, he was not ready for the news either, but he is worried about me having to go through a surgery again, and as my doctor said, a biopsy is nothing compared to surgery. God bless you Nessie for already going for us. ;)
FYI: it took me a week for a BM after my laparoscopic because of pain pills, so Nessie, take something.
Getting tired, going to try to sleep, talk to you all tomorrow, I am going to need my online friends, so glad you are here.
:angel:
Katie

kt8889
03-19-2008, 10:04 PM
Sorry Linda, I missed yours and yes, I am a healthy 37 yr old woman.....so I am right there with you!
Prayers to all of you tonight!
Katie

nessie1
03-20-2008, 06:39 AM
my special ladies

linda - i really feel for you with this waiting game. all the different opinions and all the worry is not good for you. try and stay as positive as you can , i know its hard and it seems to take forever to fully know where we go with all this. even though i have been told mine was a fnh i still have to wait for the results in 3 weeks time, bearing in mind i have 4 other little ones in there i just hope its all ok. the worry never goes away.

- beth, juliet. well i took some natural laxative last night and have been on the loo for an hour this morning!! really hurt - i hope i havent ruptured any internal stitches!my doc was happy to let me go home as he said that it would happy more naturally if i was on my own thrown!! juliet - please please try not to worry. you are young and healthy and im sure its one of these benign tumors so please try and relax mate. i know its so hard but just remember we are all here for you . the morphine was vile - completely monged me out but i could still feel all the pain?? - go with the epidural and tramadol.

- katie - im so so sorry love. i cant even imagine how you must be feeling right now. to build your self up for surgery and then be happy that its a FNH and now this must be so upsetting. i really dont know what to say other that i wish i was there to give you a hug. you just need to try and re-focus on getting it out . this really is not the news you wanted i know but i do believe these obstacles in life are sent to try us and you will overcome them. take care hun . x

i had a lovely evening last night. my work colleagues sent me a beautiful bouquet of flowers, a massive chocolate hamper and gift vouchers for next. i was overwhelmed. people are just so kind.

im thinking of you all at this trying time - so glad we have each other

:angel:

kt8889
03-20-2008, 09:48 AM
I truly do not know what I would do without this board. You all are the best support in all of this, I am so thankful for each of you.
I went to bed early last night, I was emotionally done, and slept ok, and woke up to your notes . It is so helpful to read about what everyone is going through, Linda..please let us know ASAP about your MRI. When do you see your surgeon next?
Ladies, I need to get going, I have a busy day today, but I will get online later, I am still sad about the news, but I know it is best to just deal with it.
Prayers to all of you today,
Katie

LindaG40
03-21-2008, 12:53 AM
No word from my doctor yet, but I'm going to call tomorrow and see if radiology has reviewed my study. I'll just keep waiting and praying for everyone else, it keeps my mind off my own troubles anyway!:cool:

kt8889
03-21-2008, 10:58 AM
Good Morning/Evening all, ;)
Thank you again for your supportive words. Linda, you need to find something out so I can focus on your stuff. haha
I am feeling a bit better emotionally. My best friend from high school called this morning to check on me and I cried on the phone with her. I just wish I could get past this beat up feeling inside. I just need to accept and move forward with knowing I am doing the right thing. We all know it is the right thing, I just need to get past this already.
Ok, enough from me...no more negative...I need to be half a positive as you all and everything will be just fine.
This is a wonderful weekend for prayer and meditation, I will continue to pray for all of you and I will request a prayer for me to be at peace with all of this. My surgery is scheduled for April 3rd at 7:00 am.
Happy Good Friday to all of you,
Katie

nessie1
03-21-2008, 02:41 PM
hi

Katie - you sound like a very wonderful lady and i know you will be just fine. Enjoy your easter weekend and know that this nightmare will be over soon and you will be at peace from all this worry.

linda - did you manage to find anything out??

im not feeling too bad today - i think i look worse than i feel. need to put some weight on so tucking in to all my chocs! - cant wait to have a bath this weekend.

Have a lovely weekend all, take care

nessie x

bethegk7
03-21-2008, 04:14 PM
Katie, hang in there. A positive attitude is important. You will be fine. At least you do not have a long wait for the surgery. I wish mine were sooner. I think the waiting is the worst part. It gives you too much time to think. Just think you have people all over the world praying for you -- that is pretty great.

Nessie, I hope you get better with each day. We are at my parents for the weekend. My mother had surgery and we brought her the best medicine -- her granddaughter. I cannot bring myself to look at her tummy and see her incisions from her laporscopic surgery. I am such a wimp.

Have a peaceful weekend all.

Best,
Beth

kt8889
03-21-2008, 04:29 PM
Nessie and Beth, you are so right....I am working on my positive thinking. Beth, enjoy your weekend, I know your mom will love have you and your daughter around.
Nessie, how are you feeling, getting better every day? I know I could feel the difference every day after my biopsy. I hope you have a wonderful weekend. Is your son on break at all? A great time to get caught up with card and board games with him.
Linda, we want to hear from you if you hear anything. Juliet, have a wonderful weekend dear.
Happy Easter,
Katie

kt8889
03-21-2008, 04:50 PM
Hey Nessie, I have a question....At what point did they give you your epidural? I had an epidural with my daughter and it was so painful getting it, I went through natural childbirth with my son.
Were you asleep or have some medication in your system before they gave you the epidural? I have a major fear of it.
Thank You!
Katie

srwolts
03-21-2008, 05:22 PM
Hi everyone! This is my first time posting although I have been reading a lot. I have a 5cm mass on my liver and they are pretty sure that it is an Adenoma. They are going to do a liver biopsy this coming Wednesday and I am SO nervous about it. Can someone share the details of what all goes on during this whole process. I will be having surgery in April to remove this.

Thanks,
Stacey

nessie1
03-22-2008, 06:45 AM
hi all

firstly epidural - this was put in once i was asleep. i had an epidural with my son so i know how painful it is but thankfully i was asleep . the needle was a lot higher up my spine then when i had one in childbirth. i didnt fell it come out either. my back is still quite swollen though. juliet my scar is fab. it still has dressings on but im having those off today so i can have a bath. it runs from the end of my right rib, curves around it and ends just below my sternum. no staple marks just a thin line. hopefully will fade to a thin white line in time. the skin is not puckered either -all in all looks pretty good. you are right though the waiting is the worst bit.

katie my son is only off the friday and monday and then has 2 weeks off in two weeks time! he has been brill - we have spoilt him rotton but he has been so brave bless him. he helps me get dressed and is being a little sweetheart. im still able to play with him . i can do little chores, i move about well although im limping due to my pressure ulcer on the foot. i can make a sandwich and cup of tea, stairs are ok, just get a little shaky if i do too much. i am only on 4 tramadols now rather than 8 and just take paracetimol. i feel pretty good considering i have had major surgery. i had pizza's yesterday which did give me indigestion where my gall bladder has gone- that will teach me for eating the wrong type of food!! your surgery is not long at all hun . we are all praying for you .

stacey- welcome to the board of special ladies!! . sorry i dont know about the biopsy either as they couldnt do that to mine. im sure you will be fine though.

have a great weekend all

nessie

kt8889
03-22-2008, 10:01 AM
Welcome Stacey,
Go back a about 10 pages or so a and I think it is Beth that will walk you through a needle biopsy and I describe a laparoscopic bioosy. Do you know what kind you are having? Read through it and we will be glad to answer any other questions. Honestly, I think between the 5 of us on here, we can cover almost anything about these lovely tumors.
This thread is a continuation of another, started in 2003...FNH vs. Adenoma, if you take the time to read both, you will learn sooooooo much.
Nessie,
Thank you for answering that, you made me feel better about the epidural and I love it that you know just what I was talking about with getting at child birth. Once again, I don't know what I would do without my friends around the world. Have a wonderful weekend, my boyfriend is gone all day today, so I am getting my hair done and going shopping, all the important things in life. ;)
Prayers out to all of you on this wonderful Easter weekend.
Katie

LindaG40
03-22-2008, 12:52 PM
Good morning!
Well, still no word from my doctor. The waiting is the hardest part! I try not to think about it, but when I do I usually think "what is it? How big? Will it have to be removed? When?" The other thing I am getting tired of is all the needle sticks! They seem to hurt more each time I get an iv put in.

Katie, I was very happy to read that you are taking the time to pamper yourself. If you're going in for surgery soon then it's very important to look good, right?

Welcome to the board Stacey! We're all in this together, so don't hesitate to ask anything.

Happy Easter everyone! Happy Spring! My thoughts and prayers are with all of you!:)

Linda

bethegk7
03-23-2008, 09:20 PM
Welcome Stacey! Ask as many questions as you like...one of us is likely to know the answer.

Katie I am glad that you asked about the epidural...I have been wondering that myself. The more they do while I am asleep the better off everyone will be!

Nessie I am glad to hear about your scar. I have read various places that the scar can be worse. I have heard it compared to the Mercedes Benz emblem. Looking at that makes me sick. This weekend when we were chatting, my husband talked about how my surgeon referred to the emblem...that I will be getting the "mercedes benz treatment". I totally missed him saying that ... I am hoping for the more modest approach that you had! Katie and Juliet have your surgeons said anything specific about the incision(s)?

I hope everyone enjoyed their weekend.
Beth

kt8889
03-23-2008, 10:11 PM
Hello Ladies,
Linda, I totally understand about the needle sticks! I have had more blood drawn and stuff injected than I care to think about and I know you have been doing this longer than me. Last week at the doctor I had to have blood drawn, my boyfriends daughter was on break and was with us, she is 9 yrs old and wanted to watch...so I was explaining to her how nice it is to have blood drawn by the techs that do it all the time. That lab tech was the best, no pain...so talk to them about how good they are and they will not hurt you. ;) haha
Beth, my doctor said I would have half of the Mercedes scar, if he could not do it all laparoscopic. He also told me that he does not use staples, he sews me up himself, which takes longer, but he understands the scar issue. That would be worth talking to your doctor about, I am sure they are all different.
Well, my spirits are getting better, I think I am coming to terms with my second surgery.
Prayers out to everyone tonight, talk to you all tomorrow. :angel:
Katie

nessie1
03-24-2008, 08:14 AM
hello again

hope you all had a nice weekend.
juliet - my scar healing very well , like i say a thin line about 8 inches. the surgeon used all disovable stiches and they are internal. really dont know how he did it as he had very fat fingers!!i dont have any stitches to come out. on a previous surgery 4 years ago i have a 13 inch scar from hip bone to hip bone. this had a rinning stich in which was removed a week after surgery. i have spoken to a plastic surgeon and apparently the best thing to do is once your scar is dry apply a layer of micropore tape along the whole wound. - this lets the scar breath but keep dirt out. you keep this on for 3 months approx. as it peels away at the ends just cut off that bit and apply a new bit. - do not pull at the tape! the surgeon i spoke to says this greatly decreases the scar size.i did this with my last scar and its like a paper line - brilliant. this new scar though is so thin i prop will not need to do that. my fnh was high up on right lobe so the incision stops about an inch below brest bone. i did do too much yesterday and picked up something a bit too heavy so im paying for it today - scar feels very sore. i will rest today.
beth make sure you ask about the mercedes as i thought that was only in really rare surgerys they do that now - where is your ademona??
anyway take care all - positive thoughts going out to you all - you can do it - dont forget if i can anyone can!!

:angel:

bethegk7
03-24-2008, 10:28 AM
Hi all -- so, my tumors are in the left lobe. Two of them are located next to the right lobe (I think my surgeon will take a little bit of my right lobe). The other one is located more left in the left lobe. One of my tumors is sitting on my gall bladder. I would certainly prefer one long scar as opposed to multiple incisions. Yuck! I called my doctor and moved my pre-op appointment up a bit so I can get the growing list of questions answered. The waiting is going to do me in I think!

Juliet when do you get your second opinion?

Nessie, please rest and take it easy.

Beth

kt8889
03-24-2008, 01:26 PM
Hello ladies...
Beth when is your surgery? Is it at the end of May? Why is it so far out? I feel for you, I don't know how you are making it, you have so long to let you mind race and question and think...bless your heart.
Linda, please let us know how you are doing. Try to stay positive through all this, you sound so strong, but I know this is no fun for you. I hate the waiting part too.
Juliet, you are so right about your boyfriend. If he does not stand by you with all of this, he is not the man for you! Just remember, men show emotions differently then we do, so just communicate with him as much as you can.
Nessie, how are you doing? I hope you are resting today and taking good care of yourself. You are not even two weeks out love, keep taking care of yourself, if something does not get done, who cares, this is just a bump in the road.
Stacey, please let us know if you have any questions..we are all in this together.
I don't know what I would do without all of you!
Katie

srwolts
03-24-2008, 05:50 PM
I go for my biopsy Wednesday and I have to tell you that i am a nervous wreck about it. So many threads that i read say their Dr's didn't want to do a needle biopsy because it was too risky on Adenoma's. Mine hasn't even batted an eye!! I am terrified that something bad will happen!!

They are going to schedule me for surgery and it should take place 1st or 2nd week of April.

I went to the doctor a little over a month ago for abdomen pain and i was nauseous every day. Well, my symptons have got a lot better. Has this happened to anyone else? I wonder why they have subsided so much. In doing all these tests, they also found that my gall bladder was only functioning at 40%. My liver surgeon here at Kansas University Medical Center doesn't really think that my gall bladder was the cause of the pain/symptons, that it is the tumor. But, he is still going to remove the gall bladder when he gets the tumor.

Surgery is going to be SO tough. Actually the recovery is going to be really hard because I have a 2 year old that LOVES his mommy!! That is going to be so hard! :(
Thanks for listening!!

bethegk7
03-24-2008, 08:37 PM
Stacey, I know the thought of a biopsy is nerve wracking but try not to worry. My surgeon did not even bat an eye and I had two radiologists and my local gastro doc all tell me to get a biopsy. I kid you not when I say that I had it done in my doctor's office. You would have thought he was merely giving me a shot. He set me off to the cafeteria to have something to eat and told me to check back in 2 hours just to make sure I was not bleeding. He really had no worries about the biopsy at all. It sounds like you are at a good place so I am sure they have done hundreds of biopsies. It will be fine...a bit painful but fine. My surgeon is removing my gall bladder as well. I know when I went to the ER for abdominal pain everyone thought it was my gall bladder. It took a few tries before someone realized it was my liver. I hope you have support near by to help with the post op. My daughter is at the age (9) when she wants to help take care of me. I am sure that will grow tiresome after a while though!

Katie, I am waiting until May for two reasons. One, it will be easier for things at my work (not so important) and two, because my husband is a professor and I am trying to wait until he is done teaching. He has canceled so many classes for my doctors' appointments so it will be easier if his semseter is over. That way our daughter will be in school but David will be home with me. However, you are right I have a lot of time to comtemplate and think of everything that can go wrong!:(

Best to everyone, Beth

nessie1
03-25-2008, 05:55 AM
good morning from rainy england!

stacey - im sure the biopsy will go fine - beth sounds very reassuring and you doc knows what he is doing. Its very hard when you have children . my boy is 5 and he has been just great. he is such a mummys boy but he has surprised me how brave he has been . yesterday my hubby had to work so i had him all day by my self. even though he is no trouble i found it very frustrating to not be able to do all he asks. he thinks cos i have had my lump out i should be better now and its hard for him to understand. he gave me a nice bath and washed my back for me love him. dont worry about your little one - he will be fine and you will be so much better in the long run. i too have had abdominal pain and nausea but all ok now.
beth - sounds like yo have planned your surgery right -but i do understand the waiting is the hardest part. you will be just fine mate and you have your daughter to take care of you
juliet - katie is right what she said - men are so different from us. my hubby didnt want to talk very much about things and was very distant leading up to surgery. when he saw me in ITU he broke down and that night cried to my sister in law for ages. they seem to block their emotions for some reason its wierd. he is fine now and really appreciates all i do at home - he is very tired!

katie -how ya feeling for next week - not like you havent been here before hey?? you know your gonna be fine. as ive said before these things are sent to try us and we will overcome them .
i am resting today- son at school and house to myself!! i am all hot and cold and shivery - all the family have the lurgy so i think i have that now!
anyway take care all prayers are going out - so glad we have each other

:angel:

kt8889
03-25-2008, 10:43 AM
Hello Ladies,
Stacey..hang in there, you are in good hands, although we 100% understand your nervousness. Make yourself as calm as possible and it will be easier. We want to know how it went when you get back. How long will it take to get the results? If they send it off, which I highly recommend, it should take about a week. You are in our prayers through all of this, I promise. :angel:
Beth, I think you have a great plan. After I read what you are doing, I wish I was waiting till it is warmer out. ;) I love summer and it would be so nice to be able to sit outside while recovering, but I guess I am just ready to get all of this over with. Your daughter will be a great help to you. Nine years old is a wonderful age. My kids are 17 and 15, and they know how to do laundry, clean, and some cooking, so I am in great shape for them helping.
Juliet, are you ready for your appointment on Friday? Get back to us as soon as possible to let us know how it went. I will be thinking of you.
Nessie, I am so sorry you are not feeling well. Sounds like the family brought you a lovely cold. :( Take care of yourself love!
Well, I am hanging in there. I was feeling some anger almost that I have to go through this again. I am getting more at peace with it every day. Work is really good right now. I am in sales and I sell computers to restaurants, you know, the touch screen systems? So, it will be hard to pull away for a while, but I will work things on the phone when I am feeling up to it. There are a couple of deals that I really don't want to lose because of this. But even as I am typing this, I am seeing that this is just a bump in the road, it could be much worse if my adenoma ruptured and I could not get help right away, right? Well, thank you for listening ladies, I am so thankful for you all.
It is sunny here in Ohio today and will get close to 60 degrees today, yahoo!
Linda, you should be getting your MRI reading soon, please let us know!
Prayers out to all of you,
Katie

kt8889
03-25-2008, 04:47 PM
Hey Nessie,
I am very nervous about the catheter. You said you had one because of the epidural. I know it is a rather personal question, but how did you deal with that one? I am wondering if I want an epidural or if it is just the best way to go, even with all the stuff that does with it. Ugh, my nerves are getting to me today. I know I should be feeling ok, because I already went through the laparoscopic biopsy, but, I think the resection is a much bigger deal than I am ready for.
Thanks so much!
Katie

kt8889
03-25-2008, 10:42 PM
Juliet, tonight, you are MY star! Thank you for typing all of that, I will try to relax about the catheter, I know you are right. I will also remember a pillow under my legs. Interesting about Chinese medicine...my boyfriend is Asian and we love the culture, so that is something good to keep in mind. I think it is just my turn to break a little and I am so glad you are here to glue me back together. I wish I could give you a big hug right now. :)
My adenoma is 8.7 cm x 7.8 cm..not huge, but not small either. I saw a picture of it from my last surgery and it is crazy looking. It looks like a softball. My surgery is at University Hospital of Cincinnati, and my doctor is Dr. Steve Rudich, the director of the Liver Transplant unit. It is a teaching hospital, at the college my daughter is going to go next year. I know I am in good hands. Funny thing, my daughter is accepted into the Engineering College there, and she was thinking computer engineering. Now that all this has happened and she has been on doctor visits and surgeries, she is thinking bio-chemical engineering, so she has the option of pre-med. Maybe this was all supposed to happen for a reason? Life works in strange ways.
Juliet, Bless your heart for having to stay in the hospital without everyone. I wish so badly I could just come on down and stay with you. You will be in good hands, the nurses I am sure will fuss over you more, I will says prayers for that for you. You wanted to have the surgery on the mainland, yes? It will be in a private hospital and a little better care? Forgive me for the questions, there are no such things as private or public care here in the states.
Beth, how are things there?
Linda, I can't wait to hear from you and your MRI.
Stacey, all will be fine, you will see. It is best to be sure what you are dealing with.
Nessie, how are you feeling? I hope you did not get to sick and worn out from the Easter weekend. I have been thinking of you.
Juliet, thank you again hon! You will help me sleep tonight.
We are blessed to have each other!
:angel:
Katie

LindaG40
03-26-2008, 05:22 AM
Hello ladies!

Sorry I haven't posted in a couple of days but I've been busy with work and I'm leaving tomorrow for a conference in Hawaii.:cool:

I called my surgeon's office yesterday and spoke to his nurse. She read my mri results to me over the phone, but I was a little confused so she is sending me a copy in the mail. It sounded like my hematoma from the rupture is smaller, but the adenomas are still the same size. And that was the most confusing part of all! It sounded like I had several, which I've never really been given a definite number in the past, and that there might be one that is 5cm (or is it mm?), but I'm not exactly sure, so I'm waiting to see what the report says exactly. She also sent an e-mail to the doctor, asking him to give me a call with his decision on what to do next. When we thought one adenoma was 5cm, he and the hepatologist agreed that I needed surgery, so now I'm wondering if that's going to happen soon. For the most part, I feel fine and don't have any pain in my side like I used to, but that could have been from the hematoma. I just wish my surgeon would call me so that I can get some answers!

Deep breath...in the meantime, I'll just say a prayer for you Katie that everything goes well next week. It's great that you have a lot of love and support at home, and keep in mind that you also have love and support from all over the country and the world!

On a side note, my dating situation has changed. The man I had been seeing has been going through a transition time with work and personal life, so we are taking a break (not my choice). It was heartbreaking at first, but now I'm a little angry about it.:mad: I have tried getting back into the dating scene again, and met some nice men, but I have not told them about my health situation because I don't want to scare them away.

Okay, enough sappy talk. I'm going to Hawaii in the morning so I need to get a couple of hours of sleep! I will be bringing my laptop with me, so I'll check in and see how everyone is doing. Unfortunately I won't have my mri report until I get back Monday night. I'll post the results then, but hopefully will have heard from my surgeon before that and let you all know what he says. Good thoughts and prayers out to everyone!:angel:

nessie1
03-26-2008, 06:10 AM
morning

linda - not surprised your confused hun!! make sure you let us know about the results when they come through - i really feel for you its just so confusing isnt it. im very jealous about hawaii!!

Juliet and katie - , i cannot back you up enough with what you wrote juliet. you are completly correct about the catheter - katie please dont stress over it. i didnt feel it at all and if anything it was a focal point for laughter. when my dad and husband came to visit they used to argue who was sitting the side if the p**s bag!!it really didnt bother me only when the epidural wore off did i feel it and it was then that i said i wanted it out. as soon as you can walk it comes out and it doesnt hurt one bit. I know this is completely gross but it was also THAT time of the month for me and that was the really awful bit. The bed baths are a bit embarressing but the nurses are used to it. take it from me if you cant feel your legs get the nurses to keep moving your limbs so you dont get any pressure ulcers like me! Katie YOU CAN DO THIS. i totally agree with juliet you have been a god send on this site and your support has been second to none. Juliet i totally understand your fears of the not waking up. that was one of my biggest fears. i held the surgeons hand before i went to sleep and just said "please look after me" when i woke up he was there holding my hand still!! my hubby thinks he had a soft spot for me!! juliet i didnt really have any visitors. i had surgery on wed and my hubby was there. he didnt come again til the saturday. my dad came daily but i was so tired i cant really remember him being there and to be honest it was probably a wasted journey for him as it was an hour each way. i enjoyed a bit of time alone to be fair. i couldnt wait to see my son on the saturday and they also came on the sunday but that was it. you will be fine ladies. that is why we are hear to vent our anger and tears. my previous posts show just how scared i was and i am still here to support in any way i can. im sure i will have good and bad days and i so wish we lived closer.

i feel ok today. still have the shivers and feel very skinny and frail but im hoping appetite will come back soon as i need to put some weight on. i think my bra is for about a five year old and i still dont fill it!!

My dressings are coming off today also- yeah!

take care all - we are very lucky to have each other.

nessie x

bethegk7
03-26-2008, 10:09 AM
ladies, this is why I am so grateful for this board -- the honesty and the ability to share. My husband is an amazing man but when things get really scary or upsetting he clams up. I cannot pry a word out of him about how is feeling or get him to talk to me. I am terrified that I will not wake up. I am terrified that I will not see my daughter and husband again. I know it is irrational but there it is. In some bizarre way knowing that other people feel that way makes me feel better or at least makes me feel like I am not being hysterical. I know it will be ok and I am grateful to hear from Nessie that you can recover. I will be eternally grateful to Nessie and Katie for sharing their experiences with us. It helps immensely. Katie you can do this! It sucks but you can do it! Just keep positive.

I had a planned c-section with my daughter and was not looking forward to the catheter. They put it in before my spinal and it was not bad at all. No worse than a pelvic exam .... actually the pelvic is worse. I hardly noticed it after the c-section and the removal of it was easy and not bad. It is the nasal-gastric tube that has me twitching.

The hospital where I am having surgery is about a one hour drive from my home. I have told my husband and parents to not come every day. I imagine I will be out of it. I would rather have my mother there when I first get home. Juliet do you have friends in Melbourne that can visit?

My biggest tumor sits at the junction of the two lobes and by my portal vein. Walking to work this am I got really winded and had abdominal pain. I was so distracted by that (this is funny) that I walked into the parking lot behind my building not paying attention and the gate where cars exit closed and hit me in the face.:o I was so embarassed (fortunately just a student saw it happen) but I can feel my cheek swelling. That pretty much sums up my existence -- I am so distracted by this! Juliet did you say you were having issues with the tumor pressing against your portal vein? That was the first time that I have gotten winded and had intense pain, but I never know if it is real or imagined!

Linda, you need to get the results of your MRI and some explanation! My husband asked about the number of tumors and my doctor said that some people have loads of them but they are too small to see on film. Multiples are not uncommon. It also depends on the MRI tech and how well they did the scan. MRIs, ultrasounds etc... are all operator dependent...if the operator is good you get a good film, if the operator is not good ... then you can get sketchy films. That is what makes these tricky. I had a really bad MRI in Jan. and had to have another in Feb with fairly different results in regard to tumor size. Location of tumors has also shifted from scan to scan...crazy. I always get a copy of my results, partially because my dad is a retired radiologist and reinterprets everything for me. All reports should have a final reading that is in basic english that you should be able to comprehend.

Thank you all -- stay strong. Beth

kt8889
03-26-2008, 11:47 AM
Good Morning my special ladies......I am thanking God for you! What a blessing this site is!
Juliet, thank you again for your kinds words. I am working on feeling better about it all. I just really don't want anyone down by my va-jay-jay, we are having surgery on our livers for goodness sakes. :D I have no idea where my modesty is coming from, I have two kids, but I guess it has been a while. I love that Nessie and your family made it a joke. Hopefully the drugs will help with all that stuff.
Linda, I am so sorry that you are still in limbo. I swear, it is the worst. I will pray you doctor calls you ASAP. If he does, please let us know. When I meditate, I dream of a beach, warm, soft sand...hopefully you are the same and take some time off work to relax a bit on a real beach. It is good for the mind and soul! I am also sorry about your relationship. I was for the most part single for 7 years after I got my divorce. I went on dates, but never found the "one". Give your heart time to heal and take good care of yourself. Have a fruity drink with an umbrella for us and toast to you being the strong woman you are.
Nessie, Thank you for your kind words of wisdom. This is all so new to me..bed baths and such..when I had my son, 15 years ago, I went through natural child birth, I did not even have an IV, and I was ready to go home 24 hours after. :cool: I will just keep an open mind. And, Nessie, would you please eat....my tumor is over by my right rib, so I have no problem eating. I have gained about 20 pounds since Will and I have been together, 3 years. I call them happy pounds, but I would love to loose them with all this. ;)
Juliet, You will need to stay away from all form of hormonal birth control I believe. I so understand about the no baby thing. I had my daughter when I was 20, just a baby myself, so now that they are older, this baby factory is closed, I am ready to have fun. So, I am thinking about the best option for BC for me. And don't let Pete off to easy...it is his home too, so he can pick up after himself, even if your mom helps you out after you get home. ;)
Beth, I had a visual of you walking to work this morning and I so feel for you. I am like that too. We are all here for you and we can keep venting on here, I think it is so good for us. I do not have a fear of waking up. I think because I just went through it, it was very peaceful. I remember very faintly taking the oxygen tube off my nose and remember a nurse sitting next to me, not talking or wanting me to talk, just sitting there, watching to make sure everything was ok. It feels like about a half hour we sat there. I promise, that part is going to be ok.
Well, I guess I better get some work done today. It is a nice day here, feels warmer, but Spring rain is on it way for tonight.
Prayers out to all of you....especially for Stacey, she is having her biospy today!
Hugs....Katie

nessie1
03-27-2008, 05:52 AM
morning lovelys

well i have woke up to lots of posts!! you are all busy typing!!

beth - oh my god how embarressing! that did make me chuckle - sorry ! hope your ok mate.

stacey - any news hun - how did it go??
juliet - yes the weight loss was also due to me not being able to eat large meals. i would eat about a third of what i normally eat and be in pain exactly where you said. i was 122 pounds but am now 108 and am 5ft 6".it sounds like maybe you and pete need a chat. he sounds like a nice gut but men are weird as i have said. just try and talk to him . i am like an old lady at the mo. i have a pressure cushion coming today for my boney bum and new dressing for my foot. i also have some build up shakes from the doctors that they give to old grannies to help me gain weight!! - he he !!!

katie - i love your term for our lady bits!! how you feeling today?

i just want to share with you all something.......
as you know my mum died when i was 5 years old and i was so afraid that history would repeat itself as my son is now also 5. i was not only afraid of not waking up but also of not waking up and being me if that makes sense. i just want you all to know that your worry is completely reasonable but in a few weeks time you will feel like me. so so grateful to be here. i can wake up and look at my son every day knowing i have done the right thing. to be honest i was quite angry when this all started happening. i found the lump and then had all the tests etc before finally getting diagnosis. i thought "why me" surely i have been through enough already - (i wont give you my whole life story as you may nod off!) but now the little worries in life just dont seem to matter. before the op me and my hubby had problems as all couples do, but things were getting on top of me. now however even though the same problems are there they just dont seem to matter quite as much. its so natural to have mixed emotions and i guess what im trying to say is be calm, you will find the inner strength to get thru this. i know my mum and gran were taking care of me in there and i know angels, weather you believe in them or not, will be watching over you all.

sorry i just wanted you all to understand how i feel at the mo. it wasnt half as bad as i expected and i do look at life differently now.

take care all
sunny here today but still cold!
nessie x

bethegk7
03-27-2008, 10:14 AM
Morning! I managed to get to work without walking into anything today!

Katie, Juliet is right if you had natural childbirth you can handle anything! I never had a contraction. My daughter was breach and they had to do a c-section. Even if I had gone through labor I was all for the epidural!

Juliet, men are just built differently. My husband is amazing but he one flaw and at times it is a huge flaw is the lack of emotional sharing. He clams up when he gets stressed and doesn't talk about what is stressing him. We don't talk much about my surgery. After 16 years of marriage he is getting better at reading me and knowing when I need a hug. There are times I just want to talk and it is as if I need to physically pull words out of him. Other than that he is amazing so I try not to hold that against him. In the end I get passive/agressive and get mad that he doesn't talk. What I have to remind myself to do is say point blank, this is what I need from you. No one can read are minds. So, just tell Pete what you need from him. If he cannot take it then that tells you something. If he loves you he will try to give what he can. Keep in mind it may not be exactly what you want. If he cannot talk then tell him frequent hugs are nice. My husband is hugging me a lot more these days. He gave me flowers a few days before Valentine's Day (which was the day we were getting my results) and I joked he bought me flowers cause he thought I was dying. So, men just show their concern differently. The best way is to be open and forthright which is hard in a newer relationship. I have 17 years of history with David so it is a lot easier to be completely honest. Ok, enough preaching.

I wish I were losing weight!!!! That does not seem to be one of my problems. I have been joking that this is my new, very expensive weight loss approach. I can stand to lose some weight so I try to focus on that.:D

yesterday was the first time I was breathless and had pain. I will have to see if that happens again. I seem to be having more constant discomfort.

Nessie, thank you for sharing -- I am so worried that I will not see my daughter again. As you know from personal experience ... parents can die. My sister-in-law died 2.5 years ago and it has been so painful to watch my neice and nephew deal with that. I know that this is going to be fine. I told my husband last night that I did not want to die and he was sweet and reassuring. That was the first time I said it to him. I took my own advice and may that leap. It was hard but I felt better saying it to him.

Stacy, how did your biopsy go?

Juliet good luck tomorrow.

I hope Linda is having fun drinks for us all!

Katie, thinking of you!

Best,
Beth

srwolts
03-27-2008, 10:56 AM
Hey Gals!
It's Stacey and I had my biopsy yesterday. I have to say that it wasn't near as bad as i thought it was going to be. I am a little sore today, but i am here at work.

It was a long day but it was pretty easy for the most part. I did feel the numbing shots they administered but when it came time for the actual biopsy needle...I DON'T REMEMBER ANYTHING!! WOO HOO!! After they were done, i went to recovery for about 2 hours just to make sure i wasn't bleeding. I felt pretty sick to my stomach but i think that was due to taking a 600mg ibuprofen on an empty stomach. I couldn't eat anything all day until about 6:30 last night. I am a little sore today but trying not to tke any medication for it. My bra is sitting right on the site where the needle went it, so that isn't helping the situation. Wish I wasn't a size d or i wouldn't be wearing one today!
Thank you for all your well wishes...you gals are all amazing!

Stacey

kt8889
03-27-2008, 11:12 AM
All I can say is wow...Nessie you have brought tears to my eyes this morning, which doesn't take much these days. ;) Thank you for sharing with us. I totally understand the anger part, as I said, I have been fighting that emotion with my round 2 of surgery. I need to remember that all is going to be fine, but it is so hard before everything, isn't it? I am so glad you are feeling so good about life. I think that is a gift to you for what you have been through. Please drink your drinks and put some meat on those bones, you will feel better, including you bum. :)
Beth, you hubby sounds like a wonderful man. I have learned through the years to just ask if I want to know something from men. I am so glad he is a great support for you. I am also glad your walk to work was a safe one today. ;) Keep taking good care of yourself and slow down your walks if you are feeling pain. It is our bodies way of letting us know we are pushing it. And you know, natural childbirth was one of the coolest things I have ever done. Lights were low, soft music and I was in total control...did you know we have endorphins that make us forget the pain of child birth? Only if we had endorphins that made us forget the pain of getting a very bad epidural. haha
Juliet...I will be praying for you tonight, and it will be tomorrow for you, does that make sense? ;) You are being so brave through all this. I forget that we are a little older that you and I am very proud of you for being so strong. You can take on anything after this! Lean on Pete gently and he will be there for you.Is your mom or Pete going with you tomorrow, or is it just you? Bring a pen and paper to write notes and ask questions. Don't be afraid to ask him to repeat something. I know I sometimes become shocked while talking to the surgeons and almost and forget to keep listening.
Linda, I can not wait to hear what news you have for us. I pray it is an answer out of limbo for you.
Stacey, we are here for you....I hope you check back with us.

Ladies, I received an email yesterday from a woman that works with my cousin that had surgery 4 years ago for her adenoma with my surgeon so I thought I would ask a question or two. HER REPLY FREAKED ME OUT. I want to cut and paste it onto here, but I am afraid I am going to freak you all out. Tell me what you think and I will not show you all if you don't want me to......I am thinking that Nessie can help with it. It was just very graphic about everything with the surgery.
Well, special ladies...thank you again for being my rocks today! I am so blessed to have you.
Hugs,
katie

kt8889
03-27-2008, 11:18 AM
Stacey....so glad you checked back in with us! I am so glad you did so well. When did they say you would hear something? I am sure you doctor is sending if off to be read and that takes about a week or so. You will be in our prayers through the week, the waiting is very hard, but we are here for you. You can vent or ask questions...as Nessie says, we are a special group of ladies! :angel:
Hugs,
Katie

bethegk7
03-27-2008, 02:24 PM
Katie, I would like to see what the woman said but only if everyone else is game. Is it that bad?

Stacey, I am glad that the biopsy went well. I wish I did not remember the biopsy....it was very uncomfortable. I could feel him digging around! You will feel better within the week. The soreness goes away pretty quickly!

Best,
Beth

LindaG40
03-27-2008, 04:15 PM
Aloha ladies!:cool:

I just caught up on reading all of your messages, and I am so grateful for this board and all of you. I cried and laughed out loud, which is great! Katie, I'm dying to know what the e-mail said, so please post, with a warning.

Beth, how's your cheek? Ouch! But I totally understand the distraction thing, so hang in there.

I keep checking my messages at home, but still no word from my surgeon. I have to say, my biggest fear about surgery is how I'm going to feel when I wake up. I've had foot surgery before, and I did not like feeling out of it when I first woke up from the anesthesia. And my other fear is the pain. The good thing about the guy I was dating is that he is a surgeon, so he was very reassuring and made me feel confident about the surgery itself. He had also told me that my surgeon is very good and well-respected, so I am in great hands and should feel confident about that. But like most men, when he has emotional issues himself, he closes up and pushes me away.:confused:

I did have a mai tai last night, and let me tell you, I don't have the tolerance for alcohol anymore! I have cut way back on my alcohol intake since my diagnosis, just so that I can be as healthy as possible should surgery take place anytime soon. I usually only drink wine, and maybe a glass or two at the most once or twice a week. I used to drink a glass of wine every night with dinner, or sometimes a cocktail like a margarita. I'm just not into the bar scene anymore, and I don't go to happy hour at all, so my alcohol intake is much lower. Bottom line is, the mai tai made me very sleepy and I had a little bit of a headache this morning!

As far as the weight issue, I have a few (ok, several) pounds that I need to lose. I've lost about 21 pounds of fat in the last six months, but that's because I've been swimming 4-5 times a week and taking yoga, and I cut way back on my daily calorie intake. I've found that swimming is the only exercise I can do that doesn't make me winded or give me pain in my right side, and fortunately my gym has an indoor pool. My hepatologist told me that my metabolism and weight are not affected by the tumor, and that liver function itself is not affected either. He did say to expect to lose weight while being in the hospital post-op, but otherwise I would have to do most of the work myself. Every time I have pain in my right shoulder or side, or that GI pain of feeling too full, I get worried. All of these things were happening to me when my tumor ruptured, so I know what the signs are to look out for.

Okay, enough chatter from me. It's about 9:15am here in Honolulu, and I don't have to be at the conference until 5pm, so I'm heading down to the beach for some fun! I just wish it were a little more quiet though. Between the construction and the people screaming and laughing, I haven't had too much relaxation and quiet, but that's okay.:)

kt8889
03-27-2008, 05:02 PM
Linda...have you thought about that you are almost 24 behind in time from Juliet while you are in Hawaii? Juliet will be waking up to our post and you are just starting your day....sorry for the ramble, I find it so cool that we all found each other. :) I am glad you are having a fun drink though, I hope you have a great day today. Congratulations on your weight loss, I am so proud of you. Take a walk on the beach for me if you can, a slow one. ;) It is very gray and rainy here. Are you waiting till you get back to the mainland to call your doc? Just let us know when you do. Please keep taking care of your heart...you sound a little hurt still....hang in there.

Juliet: This is a warning for you.....Nessie will be able to make this email sound better for us...but I am going to post the email I received. You guys might not even thing it is that bad, I think I am just getting very nervous, but tell me what you think.
Hugs to all of you!
WARNING..PLEASE DO NOT READ IF YOU DO NOT WANT TO HEAR MAJOR DETAILS OF LIVER SURGERY!

Katie,

I was so relieved that your surgeon is Dr. Rudich. He is amazing. You are in very good hands. I know how scary this is. I remember lying in bed crying and just asking God to give me peace about the major surgery I was about to undergo.

I had been having pain in my right upper quadrant for months and I was soon to be married, I thought it was my gallbladder and decided that I did not want to feel bad on my honeymoon, so I had it checked out. It turned out to be a liver tumor which I was told was cancer. They said the tumor was about the size of a plum. I first saw a surgeon at Christ (HOSPITAL) who told me that he would not operate, that I would die on the table. I was devastated, but God works in mysterious ways. My mom ran into someone at church who knew someone with a similar problem, and she had surgery. Dr. Rudich was the surgeon. We saw Dr. Rudich the next week. He told me that he did not believe that it was cancer, that it was an adenoma or a FNH tumor and d/t the size, it had to come out. It was growing very quickly. Dr. Rudich ensured me he would take good care of me, and he did. My surgery was 1/13/04.

The surgery took about 6-7 hours. The tumor had grown to the size of a softball. Dr. Rudich stated that he could try to get the tumor with the hand assisted laparoscopic surgery which would involve an incision about 4-5 inches long, but he told me that it is safer to open me up. So I did, at that point I just wanted to live I didn’t care about a scar. My incision is 9 inches across and 2 inches going upwards right in the middle. It looks like the center of a peace sign. I was intubated during surgery. They will put an arterial line in your neck and wrist. They did this to my when I was awake. It is like an IV in your neck and wrist that they put a stitch in to hold it in place. It wasn’t too bad. I also opted for the spinal as Dr. Rudich stated that it will give me better pain control. Unfortunately the spinal was not placed properly so I had to go to a morphine pump. UC is a teaching hospital and they will let students place the lines, I would recommend that you say they can watch, but you want the Resident MD to place the epidural.

After surgery, I was in the surgical ICU for the rest of that day, and then that night moved to the liver floor. I had a drain tube that was placed in my liver and coming out my side. It drained some fluid into a little bag. This is to ensure there is no infection. I also had a NG tube going up my nose down into my stomach. They put this in to pump whatever is in your stomach out so that you don’t throw up. I have this for three days. I actually preferred this because I was very afraid of throwing up. I was in the hospital for 7 days. One week after discharge, I had to follow up with Dr. Rudich to have a CAT scan done. I saw him a couple more times after that for refills on pain medication. I have not seen him since. I have scans done once a year to make sure that the tumor doesn’t come back. I am sure they will tell you that you can never take hormones, such as birth control, as it increased the risk of these tumors coming back.

During surgery, I was fortunate enough to not need blood, however, for some reason I am unable to keep iron in my body, and ever since the surgery, I get iron infusions about every 6 months. Because of where my tumor was, they also took out my gallbladder, they never discussed this with me, they told me this when I woke up. My gallbladder was also diseased because of the tumor. Having my gallbladder out gave me the “dumping syndrome” I could not eat anything with fat, but that has gotten better. Dr. Rudich said that I would probably lose about 25 lbs after surgery. I actually lost 40…you will most likely loose weight.

I was off of work until April the 1st, so about 2 months. Mornings were the hardest because the incision would hurt pretty badly, but after I was up, it felt better. I would take 2 Percocet a half hour before getting up.

You WILL make it through this surgery just fine. You are in such good hands. I will be dedicated to pray for you and any, I mean ANY questions you have, call me or e mail me. I know how scary this is.



Take Care,

Kim

LindaG40
03-27-2008, 06:37 PM
Hi again...I came back up to my room to eat lunch and change into my swimsuit after doing a power walk on the beach path, and thought I'd check messages. Also, I remembered what made me laugh out loud from the earlier posts. It was Stacey's comment about wishing she wasn't a D cup so she could go braless! Ha, I am in the same boat and always wonder why women would want to increase their bust size. They are a pain!

But I digress. Thanks for posting the e-mail Katie. It was pretty much what I had heard about surgery already. Also, I don't think I've mentioned this, but I did find video of a liver re-section surgery on a 10-year-old child that I watched. Don't ever do that!

I have been checking my messages at home and there still is no word from my surgeon. I'm going to wait until I get home to call again. I did notice this morning during my walk that I feel some tightness and a little bit of pain in my side. I had been walking for a while and started to really pick up the pace when the tightness and pain started, so another reminder to take it easy. I'm off to swim now...Aloha!:cool:

neens7982
03-28-2008, 02:33 AM
Hi Girls!!

Nessie, I am so glad your surgery went well! I had my surgery on Dec 18th 2007 in Dallas...if you remember. I just wanted to post you an update and tell you that I am feeling wonderful! I think the first four weeks are hell, but I can finally say that I am feeling 100%. I think the resection to remove my hemangioma was the best thing I could have done.

I placed information on my surgery and all the lovely details in the previous thread that was closed. But, if anyone has any questions, be sure to ask.

I was reading about Nessie having the epidural. I did not have an epidural with mine in Dallas. They put tiny little tubing near my incision and I had a "ball" of medicine in a purse that literally deposited pain medicine directly to the site. It worked so well that I hardly had to use any morphine. I was absolutely amazed at not having very much pain. I have had two children...both, I used epidurals for. I also had a gallbladder removed laparascopically which was horrendous. But, by far, this method was absolutely incredible.

I wish this board was actively going when I went through things in December!! All the support for everyone is incredible to read!!!

Hang in there ladies and know that there is a light at the end of the tunnel!! Stay positive!!!

nessie1
03-28-2008, 07:03 AM
morning

ok - lots of issues today hey??
stacey -so glad you are ok after biopsy, you will be fine in a couple of days im sure. lets hope you get the results soon.

linda - hi there -sounds like you are enjoying hawaii, im so jealous! pls take it easy though. well done on the weight loss! if you do get pain pls just chill - you dont want to hurt yourself! i wsh your surgeon would hurry up with these results .

beth - hi hun , so sorry to hear about your sister in law, it is very hard to talk to people about are fears which is why this site is so good. your hubby sounds fab and just try and remain positive -i know its so hard.

neens!!- HELLO THERE - thanks for the email. im doing good thanks and im so glad you are ok. you really helped me with info before surgery and im very grateful - thank you.

juliet- oh mate! i really feel for you! well - my FNH was hard. it also was mobile. it was not there when i had abdominal surgery 4 years ago and grew to 7cm in that time so i know from experience that that can happen. i have never heard of fibrolamellar carcinoma but im sure you will be fine. in my humble opinion surgery is the way to go. no diagnosis is 100% until its removed and disected. it sounds like by flying you over and getting mri and getting results and action plan is the way to go. you say your surgeon taught in the uk. my surgeon also has - his name is Dr simon bramhall and he is no 1 in uk. wouldnt it be weird if they knew each other!. Angry scared and distant are all normal emotions hun, please dont worry too much its not good for you .
now about this email katie - thanks for posting it.

i know it sounds a bit scary but let me just make some tiny adjustments with my experience!
every surgery is different i know
mine took 2 hours. the line in the neck was placed when i was asleep, it was one central line stitched in and 4 tubes coming off it - they looked like dread-locks! i never looked in the mirror as i think it would have freaked me but to be honest and i really mean this - i could not feel them. they simply used these to take blood and administer drugs but not a continual flow as in the lines in your arms. the lines in my wrists were also put in when i was asleep. i had one in each wrist, and one in each arm a bit further up than the wrist and one in the back of one hand.they were not all connected up to drips at the same time so i really dont know why i had so many! didnt feel a thing - honest. i had a nasal tube for 6 hours. as i have said before you dont really feel it but just have a bit of a sore throat. as you know i had epidural not spinal, and i had constant shaking so if you think you are going to react ask about that purse thingy that neens mentioned earlier.
i had one drain about 2 inches below scar - one warning sorry but i want to be honest - these hurt when they come out so have it taken out whilst you are still numb!
i did not have transfusion as they do bloodless surgery nowadays - i also have no bruising whatsoever!
they constantly monitor blood pressure, oxygen levels and take blood daily to check all is ok.
the mornings are ok for me - i am a bit stiff and im not sleeping but i have been an insomniac for well over a decade and refuse to take anything for it!
i find if i do not rest in the day and support my back then i do get a pain at the back of my liver.

one really weird thing!
as im so little where the tumor was i now have a dent! they have said that as my liver grows back this will fill back out!!

i hope i have not scared anyone - as i have said before i am a right baby when it comes to pain so if i can do it anyone can. i cannot believe how well i feel considering, . dont forget these surgeons are incredible human beings, they will look after you. i am drinking my shakes - they are vile!! but i do need them!

stacey and linda - stop bragging about your d-cups! - im soooooooo jealous!!!

take care all , and please dont worry everything will be alright;)

nessie x

bethegk7
03-28-2008, 12:16 PM
Katie, thank you for posting that email. It freaked my out too but it is good to know. I feel better knowing what to expect and knowing the detailed questions that I need to ask my doctor. I think Nessie is right everyone will have a slightly different experience.

Neens -- I was reading your old posts. It is good to hear from you and that you feel 100%.

Juliet, I hope the tears were beneficial -- I did not mean to make you cry! It sounds like you are in good hands. Adenomas can be palpable as well. You are right -- surgery does seem like the best and only way to end the speculation. Every day I feel more confident that I am doing the right thing. You are as well. I think my tumors have been growing at a steady clip. I have abdominal ultrasounds done about 4.5 years ago and there is no mention of lesions on my liver. Granted they were looking elsewhere but they were not seen in the course of the ultrasounds. I have had a fair amount of growth in the last year hence my doctor's insistence on a biopsy. My sister-in-law taught me many things one of the most important is life is short and you need to live in the moment as much as possible. I still wear a Livestrong bracelet in her honor -- she truly embodied the notion of living strong. And that is what we call need to do now.

And I am with Nessie...Linda and Stacey need to stop bragging about their D cups. I am (in my mind at least) a B cup! And, Nessie, if I come out with a dent that would be great as I am carrying some extra weight! Last night I was reading that most of your liver can grow back -- that is really cool. Thanks for the honesty about the drain coming out that is good to know and prepare for! Please rest and take care of yourself.

Happy snowy friday! Peace to you all!
Beth

kt8889
03-28-2008, 05:25 PM
We are such a wonderful group together. Only we can support each others fears....rational or not, because we are all going through it together. Yesterday someone said to me, "Oh dear, you are going to be just fine, just give yourself a couple days" and I was thinking....you have no clue lady! Have you all ever felt that way? I just know I can say or ask you all anything and we all understand, I LOVE IT!
Juliet, I have done research on fibrolamellar carcinoma. It was on ALL of my Ultra Sound, MRI and CT scan reports as a possibility. I was very nervous and you are correct, it does not show in any blood work. I feel you are in the best hands possible for whatever you have. I know there are other women that have posted that had fibrolamellar carcinoma , only found after surgery or biopsy, but love, you can not focus on that. You must focus on the fact that you are with the best surgeon, and he is not playing around. He is going to review your case with other surgeons and make a plan for you right then and there. Please, I don't know how much you pray, but give that stress to God and you just tell yourself, you found it and you are a strong woman, as we all are. :angel: We are so proud of you.
Linda, enjoy the rest of your stay and get to us when you can. I think about you every day on the lovely beach. I am also in the D cup club, but I am looking forward to loosing a bit after surgery. ;) My bra hit my small incision from my biopsy, and it is just now feeling all better...just in time for round 2! I found a video too! There is a video online of my surgeon taking out an adenoma. I watched about the first 5 mins. and clicked it closed....way to much information for me!
Nessie, thank you for your honesty. I am going to talk about other forms of pain relief with the doctor before surgery. At this point every bit of information I can get to help me be educated about the surgery is a blessing. I know how I feel about spinals and epidurals and there are other options, I feel better about it already. Keep drinking your drinks and taking care of yourself. You are my hero!
Neens, thank you for your post and idea. My father had a pump like that after he had his lung taken out due to cancer. It is a great idea! Do you have the name of the pain relief ball, or could I just say that? I had read about you also in past threads and thank you for all the information you have given to us.
Beth, thank you for being so honest, you are so right that we should be thankful and live in the moment. I am glad you did not get upset with the email. I read it again the next day, and maybe Nessie has said the same thing to us, Nessie just made it sound a little nicer. I don't know, I just remember how nervous she (Nessie) was, and now to hear her be so positive, it just did not seam as bad, does that make sense?
Stacey, let us know when you find out some more into and take good care of yourself!
My boyfriend, Will, knows about all of my special ladies...and he thinks it is so great for all of us. I think he is thankful for all of you too. ;)
Today, I had a staff meeting at my home office and my boss ask if I wanted to tell everyone what was going on. I have worked there for 5 years and there are only 12 of us, so we are close, but I almost cried having to say it out loud. Have any of you done that? I think it was just became very real when I had to talk about it. I feel better now, but just hit me for a while.
Well, I have rambled enough...I wish everyone a great weekend and will check in tomorrow.
Hugs!
Katie

LindaG40
03-28-2008, 09:51 PM
Aloha ladies!
I'm finished with work for the day so I came back to my room to change into my suit for a quick swim. Thank you so much for your kind thoughts, it has been a challenge to be patient lately. Between my health and men (dating), I feel like God is teaching me a lesson in patience! Still no word from my surgeon, so I will be giving him a call when I return home next week. I wonder if he is waiting to present my case to the rest of his colleagues at their weekly meeting, and that is why I haven't heard from him. Who knows? He is the head of the department, but I'm sure he wants to see what his colleagues think. There I go again, wondering what a man is thinking!

I find it interesting to share my story with co-workers and friends. They all get this look on their face like they feel sorry for me, and I try to brush it off and make it seem like it's not a big deal, but maybe that's my way of coping with it. I hear the sound of concern in people's voices as I explain my situation, and the conversation will go one of two ways: 1)they will ask more questions (and continue to be concerned), or 2)they will change the subject and not talk about it at all. I don't think anyone has really asked me how I feel emotionally about everything and whether I'm scared or not. Right now, I don't know how I feel only because I'm in kind of a limbo state, but part of me wants them to just go in and take these things out so I don't have to think about them or feel them anymore. It's the unknown in life that is my biggest challenge.

In the meantime, I'm going to swim in the ocean.:cool:

mharris107
03-29-2008, 01:25 AM
New here! I was diagnosed last March after a very trying time to figure out why I was suffering with pain, nasea and fatigue. I had ultrasounds, HIDA scan and an upper GI before anyone decided to look at the 3 spots on my liver. Finally I was sent for CT and MRI. I was sent to see a liver specialist and I was diagnosed with HA, FNH and hyperplasia. The HA is 6cm. The advice was to quite BC immediately. I had just started taking again 5 months prior. I was sent to a surgeon because I continued to have bad pain and naseau. My HA is surrounding the main vessels and the surgeon feels surgery is a bad option. I do not want surgery but I need a solution. I hate that I feel bad a good portion of the time. It is unfair to me and my family. I have days where I do not want to get out of bed. The pain sometimes hits me so bad that I want to fold in half during a meeting at work.
I suspect I had the tumor before my daughter was born. I actually ended up in the ER around the time I found out I was pregnant. I had the same pain back then but it was attributed to pregnancy. I feel blessed that I was able to have my daughter but I could not do it again.
I have recently found some relief in seeing a homepathic doctor. She gave me some Bryonnia Alba and it has reduced the nausea and some of the pain. The pain still gets intense during my cycle. If anyone has a solution then it would be great if you could pass along. It is also good knowing that I am not the only person dealing with this issue. It is frustrating dealing with doctors with no answers and family and friends who can not understand the issues.

srwolts
03-29-2008, 10:13 AM
Quick question for you all...I just had a biopsy done Wednesday. Do you think it's too soon for me to play volleyball? I have a tournament today and not sure if I should play or not. What do you all think?

Stacey

kt8889
03-29-2008, 02:00 PM
Stacey, be your own judge on the volleyball...if you feel ok playing, have a great day, if you feel some pressure, you are the water girl, but have fun anyway!
Hello M...welcome to the thread, and no, you are not alone. This is a thread that continued from another, back in 2003. Please go back and read everything you can on this. It can be very hard to get answers. Are you with a liver surgeon that does liver transplants? You can find them at large teaching hospitals, but there are women on here that their tumor is close to their portal vein, but still having surgery. Andenomas can rupture and/or turn malignant, so I would find a second option about surgery. I don't mean to scare you, I just want you to be educated about what is going on with you. Please feel free to ask anything, we have all been through a lot.
Linda and Juliet, that is just what I am talking about. You tell people you have a tumor on your liver and people don't know what to do with that. Oh poop, who am I kidding, I still don't know what to do with it?! :) It is just weird sometimes, but so glad you understand.
Nessie, how are you feeling. What are you able to do these days?....like cooking, cleaning stuff. Keep eating and drinking your granny drinks....it good for you!
Ok, I have an easy question. I took birth control for about 15 years. I have been off of it for about 3 months now and my face and hair feels so oily, it is like I am a teenager again. Now, keep in mind, I have somewhat oily skin anyway, even at 37...but this is silly. Did any one have changes like that after you got off the pill?
Juliet, I hope you had a great day today and a wonderful Sunday. My boyfriend, Will has a second job as a dance club DJ. He has a gig tonight, and I might get my girlfriend to go hang out with me for a last party night. :cool:
Have a great weekend everyone!
Hugs,
Katie

nessie1
03-29-2008, 03:23 PM
hello ladies

well i had my first trip out today. i went to the countryside to a farm with my son who was going to a party there. it has an indoor barn with slides/ball ponds etc. lots of my school friends were there and it was SO NICE to get out. i wore some new clothes and i nice new pink hoodie which made me look all rosey! i painted my nails and put some makeup on .everyone couldnt believe im only 2.5 weeks out! i got some fresh air but did go to bed when i got home for an hour. we have friends coming round tonight for a curry takeaway so that will be nice.
i can do little chores, washing, light cooking, and dusting but thats about it. i still have my bell that i ring for my husband when i want something!! - much to his disgust!!;)

katie -how you doing love?? i know how it feel this close to surgery but you will be fine. you should def go out tonight and let your hairdown .i been on pill for 17 years and came off last month. my skin went the opposite - very dry and my hair which is normally thick and curly has gone quite thin. i also dont have to be so harsh with the straighteners!.

i find it interesting what you say about peoples reactions. you are right as soon as the word tumor comes up they look at you with pity as though its the big C. I will say i have an amazing group of friends and my work colleagues are like an extended family. their support has been second to none and im so grateful. one thing that does annoy me is the amount of cards from people i havent spoken to in years! obviously word has spread and family members of mine who i really dont get on with and who are not very nice people have sent cards? they all come crawling out of the woodwork for a bit of gossip in my eyes. i know who my true friends are and i will be eternally grateful to them for all their help. i am lucky enough to have shared both tears and laughter with them over the years and i trust in their advice.

stacey pls go careful mate. dont overdo it!!
mharris - hi there - welcome to the board. i have just had my surgery and mine to was near the important vein! get a second opinion if you can hun. this is a very frustrating game im afraid and it takes time. we are all here for you to vent your frustration on if you wish!!

juliet -yes you must ask your surgeon if he knows mine! glad you had fun at footy and ate some pies!! your surgery will be fine dont worry

have a good weekend all!!

nessie x

LindaG40
03-29-2008, 04:16 PM
Hi Ladies...
A quick post from me before I head over to the conference. Nessie, congrats on getting out and about in your pink hoodie. You must look great! And by the way, are you eating any meat or are you a vegetarian? My doctor had told me that I would have to eat plenty of protein post-op so that my liver can grow back faster and easier.

Mharris, welcome to the board and don't be afraid to vent your frustration or ask a lot of questions. The gals have been a wonderful support to me.

Stacey, if you feel ok, then go for it, just be aware of your body and don't overextend yourself.

Katie, go out and have some fun! I know your mind must be going a mile-a-minute, but even if you can dance and forget for a couple of hours, it will be worth it.

As for the question about going off birth control, I've noticed lately that I've had some acne breakouts more than usual. I went off the pill last May, and the first few months were awful as far as pms symptoms. I was very irritable, couldn't focus, emotional, and then the cramps were bad during the first couple of days of my period. Yes, it's like I am a teenager all over again! The other thing that I miss is having a light, two-day period. I asked my ob/gyn if there was anything I could do, and she said not really. Tylenol for the cramps, but that was about it. I thought about acupuncture, but then I was afraid that might affect my adenoma(s). Things seemed to have leveled off lately, with the exception of the acne, although it's not that bad. I say that now, but just wait until I have a pimple right before a date!

Linda

neens7982
03-30-2008, 10:36 AM
Good luck with surgery Katie! I'm not sure what type of medicine was in that ball....but whatever it was, it worked!

I know my tumor was different than all of yours, but I was on the pill and had to go off. My doctor said that there was no evidence that hormones definitely makes these things grow, but why chance it. I wound up getting a non-hormonal IUD (Copper T). It works fine...periods are heavier that what they used to be when I was on the pill...but good nevertheless.

I just want to wish all of you good luck and prayers! I know it is stressful, but you can do it!!

nessie1
03-30-2008, 02:21 PM
hey there

just a quickie as bit busy today.

linda - im a meat eater! i have been eating chiken/posrk or fish every day since surgery as i too have been told lots of protien - also fruit and veg! hope you are ok hun x

juliet - the dent is still there !! but scar looking so good. im glad your surgeon agreed to do same way of closing you up. it honestly looks so good. did he know my surgeon?? i do agree abou the mascara - even though my hair is dark my eyelashes are blond and when i have mascara on you cant see my eyes!!!
im really stressing over thepill. i have endometriosis so i mainly take the pill to control that. without the pill my periods are horrendous and i have already had to have surgery once to get rid of the endometriosis cysts that had built up on my ovaries.at the moment i take 3 packs of high dose pill back to back to reduce the amount of periods as the more you have the worst the endometriosis gets. so ..... no win situation. no pill means no more growth of remaining tumors in my left lobe but risk having endometriosis come back with avengence. my GP has already recommended a hyterectomy for it and im only 33!! stay on the pill and have ok lady bits, but risk the growth of tumors:mad:

anyway enough about me , katie how are you? i have been thinking about you lots. did you have a good night?? i had curry lasy night but was then in a bit of pain - serves me right i guess!! stay calm honey, we are all here for you as you know. i will pray again tonight:angel:

best be off!
nessie x

nessie1
03-30-2008, 02:22 PM
sorry - meant to say when i DONT have mascara on you cant see my eyes - doh!!

nessie1
03-30-2008, 02:25 PM
just want to apologise for my terrible typing errors - as i said in a rush today!!
;)

bethegk7
03-30-2008, 03:47 PM
Hi all -- I have found sharing this to be relatively hard -- people don't understand. There a group of people at work who knew I was getting tests done etc... When I sent an email out after getting my biopsy results -- most people were congratulating me on a good outcome -- you don't have cancer so that's great. Only a couple of people "got it" and understood the enormity of the surgery that I face. Two women who I am particularly close to at work asked why I was not happier....when I started to explain the surgery etc... they finally understood that this is a huge deal. It is funny though, I had told one faculty member who I work with that I had just had a liver biopsy and he blushed -- I think he thought I was an alcoholic and had cirrohis. Funny, the associations that one has with the liver. Other people keep asking me if I am ok -- as if they expect me to fall to the floor in agnozing pain. All very strange. It is easier to keep it to myself!

Juliet I am sorry to hear that your incision is growing! The "L" approach is what I am destined for as well. After reading different accounts of surgery it sounds like we will all have scars here there and everywhere. I think we will all resemble human pin cushions! We will have to bear our scars with pride!

Mharris -- welcome to the group. Is the doctor who said surgery was out a liver specialist? If not, I would go see one. Adenomas are rare so not everyone has seen one. I too get pain with my periods although I am lucky that I do not get my period often.

I am fortunate that I am no longer interested in getting pregnant. Once I discovered I had these lovely tumors I had my IUD removed. About 16 months ago I had a uterine ablation. That has ended my periods, and basically any chance of becoming pregnant. The next step is getting a hysterectomy. Nessie, I do not know if you want more chlidren but keep in mind that if you have just your uterus out that does not affect natural production of hormones so you will not go into menopause. Your uterus serves no other purpose than providing a place to grow chlidren (great purpose) and a mnthly hell for us! Women are oddly connected to and in fear of losing their uteruses. If I could have had mine out laproscopically I would have. Unfortunately I have fibroids and a large uterus so I would have to have surgery and I wanted to avoid that (ha!).

I am looking forward to eating lots of meat post-op!

Katie you are in my thoughts as we begin this week.

Best,
Beth

mharris107
03-30-2008, 04:22 PM
I did see a liver specialist. He does liver transplants and surgery as well. He was featured here on the news. He said surgery is a very poor option for me. I just want the pain to go away.
I also know the feeling about people thinking a liver condition translates to alcholism. I drank in school but do not really partake now. I haven't in a few years. I just don't desire it. When I turn down drinks at work functions people just think she is the one who must have an issue with alcohol and lead to her liver problem.
I am glad to have some folks to talk to about this. For some time I felt as if I might just be crazy. All of this can not be real. Pain, nausea and fatigue. My gyno stated that I would be her example from now on when talking to her patients. I do not want to be a case study.
I wish you well and look forward to hearing your triumphs.

kt8889
03-30-2008, 06:18 PM
Hello Everyone, so glad to see so many posts and that you are all doing well. I am hanging in there. All morning we have been cleaning and laundry. It is keeping me busy and it is easier for me to relax when my house is clean. Plus my mom is coming in after surgery, so I want to make sure that she does not feel like she has to clean for me, she can just hang out and help the kids. Emotional, I am doing great today. Will went to the store to get some easy dinner stuff he and the kids can make. I am a planner, so today, I am just trying to keep busy with all of the stuff I need to get organized.
I was glad to hear I wasn't the only one with strange stuff with going off the pill. It isn't anything major, I can just tell a difference in my skin. And I am not the only one that finds all this liver stuff hard to talk about with people....so glad I am not going crazy! :)
I went out last night and yes, I am a cheap date too! haha This week was the first drink I have had after the biopsy, so it did not take much, but I had a great time. I honestly think I went a couple of hours that I did not think about my liver. That is amazing these days. My girlfriend is so crazy too, so that helps. I laughed a lot!
My doctor told me I would either have hand assisted laparscopic or the L incision. With hand assisted, he will still have to make an incision large enough to fit his fist through, so we will see. I am hoping he can do it laparscopicly, but he made no promises, I will find out when I wake up.
Nessie, you made me want to go out and get some new comfortable cloths. I am so glad you got out and had such a nice weekend.
Well, I think I am going to keep the laundry moving and try to keep busy. Maybe watch a movie tonight. With three more days till surgery, I just need to stay calm and positive. Thank you all so much for the prayers, it means so much to me. I pray for each of you every day too.
Linda, I hope you hear something this week, let us know.
Hugs,
Katie

nessie1
03-31-2008, 05:10 AM
morning.

i know what you mean ladies about the alcohal thing and livers. i actually work in the brewery industry of all things!!!! - and get lots of free booze which i have been giving away!

happy birthday juliet! it is also my hubbys birthday today - how strange! i will def ask about the mini pill as an option. is that the one that needs to be taken same time every day? im sure your L scar will be fine. as long as its thin who cares!i actually think scars are interesting ! i have 4 on my abdomen now - nice!!!

katie - you sound just like me ! i even wrote a "to do" list for my hubby and an idiot guide to running the house - such as how to turn washing machine on , what goes in lunch box, bin day etc! - he was not impressed! you are doing the right thing and i know you will be fine and this can all be over. i think the last few days before surgery are the worst as you just want it over with. glad you had a good night out though! wont be long before you are boogeying away again!

beth- hi there whats uterine ablation? anything to help with periods would be great. my GP said they could do a "suck out" hysterectomy through my lady bits which is only 1 night in hospital. it sounds ok but i cant face it yet. i know what you mean about people saying "oh well at least its not cancer". even though i feel that way now - before i was like you. SOME PEOPLE JUST DONT GET IT!. its major surgery and im so proud of myself for doing it - and you will too.
mharris - i do feel for you hun. can you not get a second opinion. ?? i was only told they could not take all mine out as too much liver to remove. why exactly cant they take it out? where is it again? i know how you feel - you just want to feel better . see if there is another surgeon you could visit - even if it means travelling it may be worth it.

one more thing. i was talking to some mates yesterday and i was saying how i just cant get over the freindships you form online. we all lead such different lives, all over the world, different time zones and weather, yet our lives are so parallel and joined by this one condition. the internet is an amazing place and i could not have got through without you guys- thank you. :)

take care all

nessie :angel:

nessie1
03-31-2008, 05:23 AM
sorry one more question - is progesterone ok?? maybe i could have the merina coil?? what do you think?

LindaG40
03-31-2008, 06:11 AM
Hi Ladies!
I'm being a tech princess and using my iPhone to post. I had to wish Juliet a very Happy Birthday!

I head home tomorrow, so I will post my MRI results when I read them, and hopefully will have some answers from my surgeon.

It's been very interesting to hear people's response to my adenomas. A few months ago, when my surgeon was in the process of scheduling the surgery that had been cancelled, one friend in particular had the most unusual response. She was in the process of planning her March 8 wedding, in which I was the maid of honor. She said to make sure my surgery didn't interfere with her wedding. When I commented that it sounded like her wedding was more important than my health, she said she just wanted to make sure I was healthy and would be able to enjoy myself. She had no idea how unsupportive and "bridezilla-like" she sounded at that moment.

I am so grateful for all of you!:angel:

nessie1
03-31-2008, 07:46 AM
no way

check out the "To all those aswesome women-neens,nessie,juliet,linda,kt..." thread - HOW NICE IS THAT!!!!!!!!!!!!!!!!!!!!!!!! :)

kt8889
03-31-2008, 11:02 AM
HAPPY BIRTHDAY JULIET! I hope you had a wonderful birthday, it is a good day to be all about you. :jester:
I checked out the new thread about us. It made me cry, yes, I am a cry baby this week. In the process in trying to get through all of our stuff, we had no idea how we might be helping others. I am so glad we are here together, supporting, venting, asking silly questions and asking the major questions that scare the poop out of us. I just feel very lucky we all found each other, and like Juliet says, you all are my close friends. ;)
Linda, I can not wait to hear your results. I have been praying that you have an answer...a direction to go in this time. You are the most patient person I know. I am so sorry your friend said that to you, ugh.!
Nessie, happy birthday to your hubby too! How are you feeling? Your son is on break soon, right? Time to break out the board games. :) Are you able to drive yet? It would be nice if you two could go out to a movie or something like that, but I was not sure about the driving.
Juliet, so when are you going back to Melborne? You poor thing, you keep having to go back and forth. Your doctor sound like he wants to make sure he has the best information before setting a surgery date, so you are in good hands. You hang in there birthday girl.
Beth, how are you doing? I am going to have to make a gyno appointment after surgery for another birth control option, so I will have some questions for you. You sound like you have done some research and I have just not gotten there yet.
Stacey, how are you doing? Do you have your results yet? Please let us know when you do and we will be there for you.
Hugs to all of you, I don't know what I would do without you,
Katie

srwolts
03-31-2008, 11:10 AM
Hi everyone!

I decided not to play this weekend. #1 my husband would have killed me and #2 I just thought I better do the right thing and wait for the ok from my Dr. I actually have an appointment today at 1:30 to find out about the biopsy results and hopefully get the surgery scheduled so I can get this thing out of me and get on with my once normal "active" life. I play a lot of volleyball normally, so this is killling me!!

Stacey

bethegk7
03-31-2008, 02:19 PM
Happy Belated Birthday Juliet! :jester:

Nessie, a uterine ablation is basically (it sounds worse than it is) when they go in and scrape the lining of your uterus and then freeze it or cauterize it. This keeps the lining from growing back. This has been great for me. I rarely actually get my period and if I do it is for maybe 24 hours. You definitely need to be done with childbearing because it is very unlikely that you will be able to conceive afterwards. Try googling "uterine or endometrial ablation". I had the mirena coil of IUD but my gyno pulled it as soon as I told him about the tumors. IUDs are not that popular here in the states so I am not sure there has been a lot of research on IUDs and liver tumors (although mirena says people with liver tumors should not use the product). Oral contraceptives go through your whole system. IUDs distribute the hormone locally so it may not get to your liver...I don't know.

Katie, happy to try and answer questions about the gyno problems. I was just thinking today that I will need to do some serious cleaning before I go into the hospital. So, I imagine I will be following your example in May! I have decided that I am going to organize photos while on disability! Hang in there!

Stacey, good luck today.

Linda, any news?

Best to you all,
Beth

LindaG40
04-01-2008, 02:58 AM
Hello everyone!
I just returned home from my trip to Hawaii. It was hard, but I had the nice surprise of being upgraded to first class for the flight home, so that was fun! The hardest part about coming home is facing the reality that I'm all alone. I have housemates, but they are asleep. I recently had to put my dog down, so now I don't have her to greet me anymore, and I haven't heard from Marc at all, so that bummed me out too. I should have stayed in Hawaii!:cool:

Anyway, no messages from my surgeon, so I will be calling his office first thing tomorrow morning. In the meantime, I did receive a hard copy of the radiology report from my mri, so here's what it says:

"Again seen is a right subcapsular hematoma, slightly decreased in size compared to the prior study, and now measures 5.3 x 1.9 cm compared to prior measurements of 5.5 x 2.6 cm. There are multiple hypervascular lesions scattered throughout the liver. These lesions are isointense to the liver parenchymal on T2 weighted images and some of which demonstrate T1 hyper-intensity on the non-contrast enhanced images. On the post-gadolinium images, there is a 3.5 x 2.9 cm lesion in Segment-II of the liver. There is another 2.3 x 2.8 cm lesion in Segment-V of the liver. Given differences in techniques, these two lesions are not significantly changed compared to prior CT. In the medial right lobe of the liver at the level of the portal vein, there is another hypervascular lesion measuring approximately 3.1 x 2.6 cm. This was not definitely seen on prior CT scan, however, this is likely related to differences in techniques. There are additional three tiny hypervascular lesions, all measuring less than 5 mm, one located in Segment-VIII, the other located in Segment-III, and another one located at the junction of Segment-V and VI. Overall, these hypervascular lesions are most consistent with multiple hepatic adenomas given the MR characteristics as well as patient's history of oral contraceptive use."

So, there's three adenomas, but seem to be below the size that requires surgery for removal. But, one has ruptured, and I don't think they can tell which one or how big it was prior to rupture. I wonder if they can remove them laproscopically and then I will be done with them? Any thoughts?

I'll let you know what the surgeon says.
Linda

nessie1
04-01-2008, 04:58 AM
morning

linda - hi there, im sorry yesterday did not sound like a nice home coming. im so sorry about your dog, i betyou miss him lots. glad you got a copy of results, make sure you call today to get an update. these reports are so confusing to me . you obviousley have multiple ones but whats the next step, are they embedded in liver or on surface?? its all SO confusing mate. keep your chin up and let us know what the surgeon says. x

juliet - when you going to melbourne hun? how are you feeling - is pete being any more understanding?? what beth said about the period thing is interesting. beth - thanks for the info. that uterine or endometrial ablation sounds good. we do not want any more kids naturally as i cant be doing with the giving birth bit and newborn baby bit - far too much hard work! so this sounds like a good idea to me. i will make appointment soon with doc to ask about having it done maybe later in year. that sounds VERY good - thanks so much as i now feel there maybe an answer in site! you are a star! - really dont want an iud so this sounds great.

stacey - how did you get on ?? pls try and post today as we are all waiting and here for you. x

katie - how are you doing? not long now hey? have you written an idiot guide like me or are your family pretty good!? i have been praying for you hun and i cant stop thinking about you as 4 weeks ago i was in same position. as much as we shouldnt wish our time away, i did really want to fast forward time just before surgery!:angel:

the shakes are going well , havent got any scales now so dont know what i weigh at the mo. hubby had nice birthday but unfortunately he has started SIGHING when doing chores! this is a bad sign. it means he is fed up helping now!i did have a dig at him last night about it so we will see how it goes! my foot very smelly from pressure ulcer - i am in a good mind to complain as the hospital have failed basic nursing standards. if i never had this i would be feeling a lot better. i cant put any weight on it for 3-6 months and it hurts. i was also on edge yesterday as was finding out if my job was going to dissapear to prague and i would be made redundant, thankfully its safe for now so at least thats one thing!

love to you all - sorry if i sound a bit wingy today - im ok really!!!

;)

bethegk7
04-01-2008, 09:45 AM
Morning all -- spring seems to have arrived here...birds are chirping and it is supposed to be 63 (17 for those of you on the metric system). Nice change of pace. I seem to be in a calm state. I think this is thanks to neens and Nessie who have so kindly shared their experiences. I am still 9 weeks away but I know time will fly! I have to admit I am anxious for Katie and will be thinking of her all week! Katie, you will do great. You have been a great role model for us all.

Juliet, check around about the IUD -- my uterus was bigger than it was supposed to be for the mirena. Maybe they have smaller ones that will work. I will be honest the mirena helped lessen my periods for about 18 months. When I had it taken out my periods were starting to get heavier. I have a track record of horrible, long periods, hence my long term usage of bc! Poor if I knew then what I know now! Oh, by the way I went back and looked at my first CT results after they saw the liver lesions and the radiologist listed the options and fibromellar whatever along with some other nasty possibilities were listed as well so don't get too stressed. I think these all look alike and cannot be distinguished without a biopsy or surgical removal!

Nessie, take care of yourself!

Linda, let us know what the surgeon says!

I had a stressful day at work and just had to keep laughing at the things that were happening. Laugh at least once a day it helps!

Best,
Beth

srwolts
04-01-2008, 10:43 AM
Well good news is that they feel it's not cancer. He says FNH now as prior he was saying adenoma. Surgeon feels it shouuld still come out because it's causing symptoms. He then stated that these tumors all look so much alike that it still has a chancce of being an adenoma. AARRGGHH!! So frustrating to not have answers about what is growing inside me.

I feel the best thing to do is to have it removed. So, my surgery is scheduled for the 15th of April. I am scared to death and my husband is too. I have a 2 year old, so a week with out him in the hospital is going to be SO hard. But, i know we will survive and it will make us all stronger! I cannot possibly leave this tumor inside me thinking that there is a chance it is an adenoma and have to go through all of this again in a few years.

Stacey

kt8889
04-01-2008, 11:10 AM
Hello all, well I am hanging in there. Will, my boyfriend and I got in small fight yesterday. I was snapping yesterday, so I know I was not helpful, but we talked. I told him I need at least 6 hugs a day and he understood that. I feel better now that we talked and he understands the stress level. I try to hide it, and it just seems to make things worse, you know? I am just so ready to get there and get this over with. I know you all understand that thinking. I am going to pack my bag tonight. Nessie, what all did you take with you? I know I want my robe and some Pajama bottoms, undies, slippers, but am I missing something?
Linda, I am sorry about your dog. My dog is 14 yrs old, I got her when she was 8 weeks, and I am going to have to face putting her down in the next year or so. It is so hard. It sounds like you have a lot going on with the new MRI. Please let us know what your surgeon says. I saw on a website that USC does a lot of laparscopic and hand assisted laparscopic surgeries for this. Is that where you are? I think it is option, but it will be up to your surgeon and the placement of each adenoma, as you well know. I hope you hear something today!
Nessie, I am so sorry about your foot. That just is not fair to have to deal with that one. I so understand about your hubby getting tired of cleaning. I think that is why I cleaned all weekend. My kids are 15 and 17, so I will just have them clean while I am down. My son, he is 15 and he is a better cleaner than me, I swear. He yells at his sister after he cleans their bathroom and she messes up the sink with make up and stuff. :D It makes me laugh. I hope your job is ok, i will say a prayer for that one.
Beth, we are getting some of the same weather today. It is rainy, but warm, I love it too. I will remember to laugh today and tomorrow. I actually just played an April fools joke on my boyfriend. We work together, so I taped a piece of paper over the light on his mouse to his computer, so know he can not use it. He will be back in the office soon, so it will be funny. ;) ( I hope)
Juliet, I am so glad you are getting in to your surgeon next week. I will be back home and up a little by the time you are able to fill us in. I will be sure to pray for you that day. I understand about all the cost of this. We have not eaten out as much lately, I want to make sure I can pay for all of this stuff. Ugh! I am sleeping ok still. I woke up very early this morning and just stayed in bed for a while. It was nice.
Stacey, we are here for you if you need anything.
Well, I better get some work done. My boss called and asked me to deal with some problems and I was like, so you know I only have two days until surgery? He forgot, but still wants me to start making calls. Ugh, I just don't want to deal with this today, but I guess I better.
Thank you for all the encouragement today. I just want today and tomorrow to go very fast! I am so thankful for each of you! :angel:
Hugs,
Katie

kt8889
04-01-2008, 12:24 PM
Stacey, somehow I missed your post. It sound like you are making the right choice. Nessie had pain with her FNH too, and she had hers out. Honestly, they really do not know what many of these are until they do a full wax biopsy. That means sending it way to a lab, believe me, I know first hand, so you are doing the right thing. Living in the unknown is not easy and God forbid, leave it in there and have it turn malignant.
Your surgery is very shortly after mine, so I will be sure to fill you on and all the fun stuff you have to look forward to.
You are in our prayers! :angel:
Katie

LindaG40
04-01-2008, 10:12 PM
Hi Ladies,

I just wanted to give a quick post of support and encouragement. Katie, it's understandable that you would snap at your boyfriend, you have a lot of anxiety this week. A big hug to you as you prepare for surgery. And hugs out to everyone else too as we continue to support each other. It's been a big help to me, I don't know what I would do without all of you.

And still, no word from my surgeon. I called and left a message today, but no word. Maybe they are playing an April Fool's Day joke on me!:)

Linda

srwolts
04-02-2008, 12:16 AM
Hello all. This is not Stacey, but her husband Chris. I just want to thank you all for sharing your experiences with us and being there for my wife to talk to. I hope you understand how much your posts have helped, even long before my wife started sharing. None of us (husbands, friends, or family), as hard as we may try, truely understand what you ladies are going through.

I think you ladies are a godsend and have included you in my prayers. Thank you again for sharing and helping me and my wife know that other strong women are going, and have gone, through the same thing. Nothing has has helped us keep faith more than reading your stories. God bless you all.

LindaG40
04-02-2008, 03:42 AM
I just read the message from Stacey's husband. Wow! What a wonderful man. Does he have a brother in California by any chance? Take care of yourself girl, you have a wonderful man by your side.

Hang in there ladies, especially Katie. This week our prayers and strength are with you for surgery. What hospital will you be going to again? Let us know.

Also a special hug to Juliet as you continue with your tests.
:angel:

nessie1
04-02-2008, 04:59 AM
morning

stacey - your hubby sounds like a wonderful man. you are a lucky lady by the sounds of it. now you have a date you can concentrate on that. i know its so hard hun, but we are all here and any questions about surgery that i can help with i will. you need to focus on that now and sont worry about your little one - he will be just fine.:angel:

linda - i really feel for you hun -still no word, you must be going out of your mind! as they say , no news is good news! please take care hun and hopefully you will have all your answers soon.

juliet - hey there , my surgeons sectretary called yesterday. i have appt on 240408 which by then i will be 6 weeks out! he said he would call me in after 3weeks so i guess im gonna have to wait. bit annoying. hubby being ok. annoyed me yesterday but i was in a bit of bad mood! im a bit snappy at the mo but my nurse did say that your emotions are up and down for a bit. when do you go to melbourne again?? like the sound of your pressie from pete, it sounds lovely - only wish i could see it!

katie - hello you brave lady! juliet was bang on with help on what to take in. i packed far too much -like i was staying for a month!! pj's are good but only when have catheter out . i wore the operating gowns the whole time i was in intensive care as you can not have any of your own belongings with you here in uk as too clinical. once back in my own room i had a good book which i only read about 3 pages! OK magazines, and some nibbles. i never got to wash hair in hospital but hubby washed it for me when we got home and since then i have been able to wash it myself. i took body wash, moisteriser, makeup which i never put on!, 3 pairs pjs and some jogging bottoms and tshirts and slippers. i had a tv but to be honest i did sleep a lot. you are bound to be so emotional at the mo and snapping is allowed! sounds like you have your children well trained in cleaning! just concentrate on getting it done now. im not sure of time difference but here in uk its 08.54 am. i am thinking and praying for you honey. you will be fine. :angel:

beth - i know surgery is a long way off for you but it will soon come around and all this waiting game will be over. time is flying for me and each day i feel a little stronger. i may even have a little shopping trip this weekend as i have lots of birthday vouchers to spend as it was my birthday last week. the girls at work are taking me out next thurs and need something new to wear!(any excuse!) just think you will have time off in the summer months(i think?) and you will feel and look a million dollars.

i sooooo wish we could all meet up! and have a group hug!!!!!!!

take care all,

nessie x

bethegk7
04-02-2008, 09:57 AM
Morning!

Katie how are you? I am thining of you and will keep you in my thoughts today and most especially tomorrow. You will do just fine!:angel:

Juliet, thank you for the detailed list of items for the hospital. You have way too much experience!:( I bought an MP3 player for the hospital. I figured that would be a good distraction. I asked my daughter if I could use her nintendo ds in the hospital and she said no way! I imagine she will relent when the time comes. I do not think that my adenomas are hard....they have not been palable. I will be thinking of you next Wednesday!

Linda, I am strangely jealous that you have surgery so soon! It is good that you do not have to wait. I have you on my calendar and in my thoughts!

My surgery is 8 weeks from today. Lots to do before then!

Hugs to all, especially Katie.

Beth

bethegk7
04-02-2008, 10:11 AM
Hi all...

I am not sure if you all stumbled on this when searching for answers but it some information posted by a man I am assuming in the UK(given that he uses terms that Nessie uses). It has some details about post-op liver resection. Moodiness is one of things he talks about.

What should I expect in hospital after the operation?
After surgery, you may have to go to the High Dependency Unit (HDU) or Intensive Care Unit (ICU) for a day or two. While you are there, your family will be able to visit as they would on any other hospital ward. Once you are well enough, you will be able to return to the ward.
When you first arrive back on the ward, you condition will closely monitored and your blood pressure and pulse rate will be checked regularly. You will have various lines connected to you, which include:
1. A drip (intravenous fluids) – This will be in place for a few days following your operation. It will provide fluids while you are unable to drink. It is likely that this will be connected to a line that goes in your neck, or it could go into a vein in your arm or hand.
2. A catheter – This is a tube that goes into your bladder to drain the urine. It enables us to make sure that you are not becoming dehydrated and check that your kidneys are working properly. You will also feel tired after your operation, and a catheter means that you do not have to struggle out of bed each time you want to go.
3. A drain – Often following surgery, there may be untoward fluid and blood that collects in the abdomen. Therefore, a drain is often, but not always, put in place to drain off this fluid. It is usually situated at either side of the abdomen, and secured with a small stitch.
Due to having a general anaesthetic, you will require oxygen that will be given via a face-mask. It is advisable to continue this for a few days following surgery, and is especially important overnight. Both the physiotherapist and nurses will encourage you to take deep breaths. In order to control you pain, you will have either an epidural or a morphine infusion. You will have the opportunity to discuss both with the anaesthetist before your operation.
The days following your operation will require a lot of effort from you. You will start off with doing gentle exercises, which your physiotherapist will go through with you along with your named nurse. The physiotherapist will see you every day to help you with your deep breathing exercises and mobility. Each day, you will be expected to do a little bit more to build up your strength until you are fully independent.

Will I suffer any side effects from the surgery?
It is not unusual for patients to go through a period of feeling low. This is entirely normal having come through a period of serious illness and a major operation. Your family, the nursing staff and the medical staff will be there to support you through this period.
For the first two days following your operation, you may feel surprisingly well. At about the fourth or fifth day, you may develop flue-like symptoms such as a mild temperature and you may become a little short-tempered with staff and family. This usually lasts for a couple of days, and rapidly resolves.
During this time, your skin may go yellow (jaundice), and this may take up to a couple of months to disappear, until your remaining liver is working normally.
At about a week, you may have a little discharge of yellow fluid from your operation wound. Again, this is quite normal, and a dressing will be applied to the area until the discharge dries up. This can take a couple of weeks after your operation, but will not delay your discharge home if it can be dressed by a district nurse.

How long will I stay in hospital?
The length of stay following a liver resection varies, but between 2-4 weeks is probably a fair estimation. It is important to remember that everyone is different, so don’t compare yourself to someone else with a similar complaint.

Any DOs and DoNOTs after discharge from hospital?
During your stay, your physiotherapist will have been encouraging you to take regular deep breaths, walks and coughs. It is important for you to keep up the good work upon discharge from hospital.
When you go home, exercise is just as important. As a guide, the correct level of exercise means you should feel slightly short of breath but still be able to speak in full sentences. Initially, this may even be on climbing stairs. This guide will also mean that you take deep breaths, and so will help your lungs too.
You may experience slight abdominal discomfort or general aches. It is all right to take simple painkillers such as paracetamol if this occurs.
Although exercise is important, rest is important too. Set aside a certain time in the day when you can rest completely and not be disturbed. This is your time and should be free from interruption. Tell your friends and family not to ring or call at this time. You will find this period of the day a time to really look forward to.
After your discharge from hospital, it is important to continue with deep breathing exercises that the physiotherapist has shown you in hospital. This will make sure your chest stays clear.
Activities such as ironing and cooking can be recommended after six weeks. It is during this time that you may feel well enough to resume your normal sexual activities.
Heavy lifting, housework or driving should be avoided until such a time when the healing process is well underway (3-6 months).
Returning to work should be discussed with your consultant at your outpatient appointment.

Do I need to take a special diet?
Following your liver resection, there are no specific foods that you need to avoid, but it is important to eat a healthy and balanced diet, which includes food that is rich in starch and fibre. You should avoid too many fatty or sugary foods.
While you are in hospital, if your appetite is poor and you have lost weight, you will be referred to the dietitian who will give you advice on improving your nutrition by supplementing you diet. This may involve eating more food, using supplement drinks such as ‘Build-Up’ or ‘Complan’ that are available from the chemist, or using supplements that are available on prescription.
If necessary, the dietitian can arrange for you to continue having supplement drinks at home, and if appropriate, monitor your weight and nutrition intake via our outpatients department. If you did not see a dietitian while you where in hospital, and you are concerned that your appetite is still poor or you are loosing weight, ask your GP if they can refer you to a dietitian locally.

srwolts
04-02-2008, 10:58 AM
Hi girls!!
My husband is truly and wonderful man and I am SO blessed to have him in my life!! He makes life worth living!

No brothers in CA though!! ;)

Katie: Good luck to you - I know you will do great! You seem like a strong, strong woman. I will be looking forward to reading how well everything went and how easy the surgery was!:angel:

Juliet: My FNH is actually on the left lobe also and is about 5cm. I don't have the option for lapro either. He will have to take almost my whole left lobe too. He is going to take the gall bladder when he gets in there too!

Stacey

kt8889
04-02-2008, 02:40 PM
Hello Ladies...I am in awe at the wonderful support you give me. I am just now getting to my laptop, I had a busy morning. Nessie, I am 5 hours behind you. I am so happy and thankful that we are here for each other, you ladies have helped me more then you will ever know today. I believe we are each others angles on earth. I wish so badly we could meet up somewhere, I would just love to give each of you a hug right now.
Well, I will go home and pack tonight and I will remember everything you said.(After my sons volleyball game) I have an Ipod, my boyfriend is a DJ....so we have tons of music. ;) I just finished my book, but I know I can get magazines when I am ready. I was just thinking PJ bottoms and wearing the hospital top, all I have at home is night gowns. I have my overnight shampoo am toothbrush and stuff. I also think I will bring my bandana, I have short hair and it can get crazy quickly. :D
Stacey, what a wonderful man you have there! Thank him for posting, it is so nice to hear how much we help each other. You are in my prayers and I will answer anything after I get home to get you ready for your surgery.
Juliet, you hang in there dear. It sounds like you got a lovely present for your b-day and Pete is not going anywhere, but standing by your side. I hope you get a date set for surgery soon for you, it sounds like that is the next step, and please, give God your stress about what your tumor is. You can not control it now, just keep moving forward. Hugs back to you love! :angel: Thank you for the packing tips, I did not think of the ipod!
Nessie, I totally understand the snapping part, I am right there with you sister. We are allowed to snap with all this stuff going on, you are right, bless your heart! Are you driving yet? Please remember to not do to much and keep taking care of yourself, you are still healing love. Thank you for the packing tips also, I will pack to much too, I always do.
Beth, 8 weeks....it will go so fast. Thank you for your last post. All the info we can get at this point helps! Is it a sunny Wednesday for you? We are having a really nice today. I think God gave me a gift today, before I am stuck inside for a while. :angel:
Linda, I will be waiting to hear about what your next step is..you keep taking care of yourself, you hear!
Well, I will get on here before I leave in the morning. I have to leave tomorrow morning around 05:20 am, check in by 06:00 am for 07:30 surgery time. My surgery is at University Hospital in Cincinnati, OH. I live about 20 minutes from the hospital, so that helps.
I can honestly say that there is a calm coming over me today. It might sound wierd, but I am "in touch" with the universe and I can feel the prayers helping. :angel: My friends, we are so blessed to have found each other, thank you so much!
Hugs to each of you!
Katie

dawnmn
04-02-2008, 03:14 PM
Hi Katie-I remembered you telling me in one of my posts about your impending surgey tomorrow, and I wanted to let you know I will be thinking of you! I'm sure everything will be just fine!! You have so much support from so many people on this board!! You were kind enough to reply to my posts, with words of encouragement and I wanted to do the same for you. I just saw my gastro today about my mystery lesion, and I'm basically on hold until July for further testing, due to it's small size. But I will continue to check back here to see how everyone else is doing. Take care of yourself, and don't stress too much tomorrow-I know it's easy for someone else to say! Good luck with everything, and post back to us when you feel up to it for continued updates!

judybee61
04-02-2008, 04:21 PM
Katie - Good luck tomorrow on your surgery - I will be thinking about you. I check back on this thread every once in a while to see how you guys are doing. The old thread helped me so much when I was going through my "What is it?" and "What ifs?".

Nessie - Glad everything went well and you're on the road to recovery!

Judy

bethegk7
04-02-2008, 05:38 PM
Good luck Katie!!!!!

kt8889
04-02-2008, 10:44 PM
Hello friends...I just got home from my son's volleyball game. He plays for his high school, wow, those matches are long and I ate something before the mid-night cut off time. I have packed my bags...now I will try to relax for a bit, wow this was a busy day.
I might get on here again before we leave in the morning, but I wanted to review your packing lists one more time. Thank you so much for all the support. Judy and Dawn, you girls are wonderful too, thank you for the prayers. We are all in the special liver lady club. ;) I am so thankful to all of you!
Juliet, you doctor visits are all next week, right? I will be back before you leave to wish you luck.
Well, time to try to setting down and get ready for the big day. I will be back before you know it, so hang in there everyone, you are my heros!
:angel:
Hugs!
Katie

nessie1
04-03-2008, 04:49 AM
katie

if you manage to get online - its 8.47am here so 4.47am there - i think??!!

GOOD LUCK HUN!!

you will be just fine and like me this time next week you will be so glad you have done it!

take care my love

nessie x x

nessie1
04-03-2008, 05:07 AM
hi again

sorry forgot to say something but need to be quick as friends coming in a minute.

the "calm" thing. i too experienced it. i went in the day before and was a nervous wreck, couldnt stop crying etc. on the day of surgery there was a very strange calm that came over me. i was very peaceful. i knew it was the right thing and i was in the hands now of someone or something else.
i do not go to church anymore(no particular reason) but believe there are greater powers at work . i do pray, and having lost 2 very important people in my life ,and experiences that i have had, i know that it doesnt end here. you will all get that calm feeling im sure. i just wanted to pass that on!

hope your all ok
will get back on later
nessie x

kt8889
04-03-2008, 05:57 AM
Thank you Nessie.....today, I am waiting for that calm any minute. :angel: Hold the fort down and we will be talking on here in no time.
Thank you to everyone for the prayers today! Time to go! Keep me posted on what is going on with all of you, I will miss each of you!
BIG HUGS,
Katie

nessie1
04-03-2008, 07:16 AM
juliet - wow thats such a cool idea. that is really really nice of you- i could cry!!!
im sorry today hasnt been easy mate. you will have good and bad days and things will get better. did you say its next wed you go? you know you are not alone hun, and anytime you feel like having a cry -do. it does help. i had a cry yesterday for no real reason and i felt tons better!

please take care mate and i think you are so wonderful for organising that.

nessie x

bethegk7
04-03-2008, 10:06 AM
Juliet, that is awesome. I had thought of doing that as well. I figured people would like I was mad. If you want I can try calling the hospital from here. Let me know.

You, Stacy and I all seem to be in the same boat -- take the left lobe, a smidge of the right and the gall bladder. Wish we were in a different boat!

It is 8:00 am in Ohio...I hope all is going well for Katie!

Beth

neens7982
04-03-2008, 10:20 PM
Just wanted to check in to see if anyone heard from Katie! How sweet to send flowers!

Nessie.....about feeling calm....I completely felt it too. I was a complete wreck the day before, but felt completely peaceful the day of. I thought maybe it was from all the prayers!! :angel:

Katie, I am saying a prayer this very minute for you! I pray that you are calm and have a very quick recovery. I also pray that your pain is manageable! Send hugs and kisses to you!!!

LindaG40
04-04-2008, 01:39 AM
Hi Ladies,

I was away from my computer from yesterday until this evening, so I haven't had a chance to post. I hope Katie did well during surgery, I said a prayer for her this morning. I think when everyone has gotten through their surgeries, we should all meet up in Las Vegas to celebrate!

As for me, still no word from either of my surgeons (the one who has been checking on my liver and the other who broke my heart...just a little). I am going to Orlando for a sales meeting next week, so I was hoping to know something before I left. I'll be calling again in the morning to see if there's any news.

I do have a question about going off the pill. I went off right after the "Rupture of May 2007", and it took a while for my period to become regular again (I won't even go into the cramps and PMS symptoms). In January I started to actually track my menstrual cycles on a calendar, and I've noticed that they are still inconsistent. I've gone from 28 days between cycles to 26 days, then 24 days. How long does it take for things to get back to somewhat of a "normal" state?

Hang in there everyone and remember to take a moment each day, close your eyes, breathe deeply for a few seconds, and be grateful for all the blessings you have.:angel:

Linda

nessie1
04-04-2008, 05:06 AM
morning all from a foggy uk.

i so hope katie is ok, cant stop thinking about her!

linda - hi hun , so your a bit of a jet setter! off to orlando! im so jealous!! love the las vegas idea! wouldnt it be soooo cool. as for the period thing im not much help. i came off pill in feb and the next cycle i had was 35 days apart. i have been on the pill continuously for 17 years with only one month off when i got pregnant! really not sure im afraid but it sucks! pain, PMS, heavy - i loath them! how frustrating for you not to hear from those men. you liver surgeon needs a boot up the back side! you must be so frustrated. as for the other one well he is obviously not worth it!as a surgeon he should know how your feeling at this time and at least offer some friendly support if nothing else! - MEN!!!!

juliet - g'day mate! im doing ok. do feel a bit emotional but it may be that dreaded PMS thing! sounds like you had a bit of a battle with katies hospital! i do think thats an amazing thing to do and you are wonderful. as for the smoking thing! well i have smoked since i was a teenager, then giving up in my 20's for 5 years! then stupidly i had one again, and been smoking on and off for about 18 months.i dont smoke in the house but like you its a stress thing and i know they are no good to me but its my only vice. if i drink when out i also smoke. i never smoke more than 5 a day but thats still 5 too many! my surgeon(dr simon bramhall) also smoked. a month before surgery i said i would give up and he said it would do more harm than good. even though im a light smoker if i stopped all together my chest may become a little congested as the nicotine and tar on the lungs break up(yuk!) and the risk of chest infection after surgery would increase. he agreed it sounded unprofessional to give me this advice but said a few a day would not hurt for now. i intend to give up completely once im 3 months out. i also could not go to toilet(no 2) in hospital and he said i should go and have a cigarette as that gets the bowels moving! he was very down to earth and i liked the fact he didnt judge me.
my scar is sore and a bit weepy. i have had to put dressings back on. as for the eating thing well i weighed yesterday and have put on 3 pound :). i know its not a lot but its a start. i need another stone and then back to normal. juliet i know exactly where you are coming from . before my op my meal size went really small, i felt full up , sick and uncomfortable. when i spoke to the surgeon as i was worried he said that worry can bring on irritable bowel which these symptoms are classic for. he reasurred me it may not be my liver but also said as my tumor was 7cm and i was only small there prob just wasnt enough room in abdomen for all my food, organs and tumor! after gall baldder removal we need to avoid food high in saturated fat. and i know its gross but im on the loo very regularly!!
hope this helps mate

hope your all doing ok my loves

take care

nessie x

bethegk7
04-04-2008, 02:43 PM
Afternoon from dreary NY.

Thank goodness it is Friday. I hope Katie is well. I wish someone would post for her.

Nessie, were there things that you were supposed to do before surgery (stop drinking, stop with medications, high fat foods?)? My doctor did not say anything. What about after surgery? I feel like I should be doing something? I have a headache and comtemplated whether or not I should take anything. Not to mention a group from work is heading out for a happy hour this evening. It has been a brutal week!

Hope all is well.
Beth

LindaG40
04-04-2008, 02:53 PM
Good morning!

To those of you who are smokers...STOP! Please!

That's all I'm going to say about that.

Still no word from my doctor. I called this morning and got voice mail again. They usually send an e-mail to him to follow up with me, but I haven't heard a word and it's been two weeks since I had the MRI. I'm hoping this means he still wants to me to wait and follow up again in six months, but who knows?:confused:

Does anyone know how long it takes for a hematoma to go away? According to the MRI it is just over 5cm, and it has gotten smaller, but not by much. I think that is what I feel in my side when I have pain. Thank God the pain is nothing like what it was when it ruptured. I don't ever want to feel like that again!

It's sunny and breezy here in California today. I hope everyone is doing well and keeping their spirits up!

Linda

P.S. In an attempt to heal my heart, I've started dating again and will hopefully find someone soon who is supportive of my health issues. I'll keep you posted!

dawnmn
04-04-2008, 10:29 PM
Hi everyone-
I Hope Katie's surgery went well and that we will hear from her soon. I keep checking in on here waiting for some kind of word on how she made out. I'll have to keep checking back!

I also have a few questions (again!) for anyone that might be able to help me out. You ladies on this board (I've been reading through a lot of the old posts)have a WEALTH of knowledge on all kind of liver conditions-I'm so impressed!! I feel as though a lot of you could probably answer as many of my questions as my own gp could, or more. I think everyone here has read and responded to most of my other posts on the main board, and some of my questions are repetitive. heres a few again-

Does anyone know how we get these liver lesions and tumors, besides oral contraceptives? Is caffeine,a fatty diet, being overweight or a sedentary lifestyle to blame? I'm thinking I'm doing something as far as my diet that I shouldn't be, and that's what caused this lesion I have. Wish I knew what I could change to keep it from getting worse!! I guess livers in general must take a heck of a beating everyday!!

Can anyone tell me about the tumor marker blood test? I'm having that done next week, (the last test I'll have until early July)and my gastro said not to panic if it comes back elevated, that it's sometimes still perfectly normal if the numbers are off. Has anyone had one done where their numbers were high, yet no cancer? My liver panels are perfect, (for now anyway)so I'm hoping this one is fine as well.

What are the chances of a lesion staying the same size for many years and not growing? Do all of you have annual scans to check the status of lesions you have that do not need to be removed? and how often will you do that? My gastro said that after a year, if a lesion hasn't grown, then they check periodically, maybe once a year just to keep track of it(unless it's a cyst, which can be forgotten about) But even with a cyst, I'd probably still want a yearly scan to check that out as well.)

Did or does anyone have any symptoms with their lesions,especially in the begining before you found out you had anything wrong? Rib pain? gas? Elevated cbc bloodwork? I can't say I have any symptoms at the moment that I can think of.

Is it possible that my lesion, which is tiny right now at 1.4cm, is the start of an abnormal cancerous growth that will continue to get larger? (This is the dark fear that keeps me awake at night) Or can this stay the same size and never be anything to worry about? And if this grows, does that always mean something bad? Do benign growths sometimes continue to get larger?

Sorry if I seem like I'm being really pessimistic here. I don't have too much of a support system about this at all. My husband is dealing with his own health issues right now, and between that and work(I'm home with our daughter) I don't want to unload my worries on him. He never thinks the worst with things anyway, and says I'm fine. Easy for him to say-he doesn't have a growth on one of his major organs!! I've been so stressed about this, I've been eating like crazy, and gained about 15 pounds as a result in the last few weeks.
At 5'1, I can't afford the extra pounds!! I just lost 45 pounds on WW 2 years ago, and I'm slowly putting it back on now. But I am a stress eater, unfortunately. Hope someone can answer a few of my questions, maybe pass on some info from your own doctors and research. I hope you all are well, and since I'm a newbie, I don't remember a lot of names on here, so I apologize! I also don't post too often, as a lack of time and PC availability keeps me away. My husband shares this PC, and he's on here a lot at night. Hope everyone has a good night, and I'll check back soon!!

Dawn

nessie1
04-05-2008, 06:41 AM
morning

beth - hi hun , i did stop drinking before surgery and had one blow out the week before i went in and had a great time!! i stopped my contraceptive but that was about it. the only thing the surgeon said was to take paracetimol and not ibuprofen for any headaches etc.

juliet - you sound so much like me!! well done again for sorting the flowers

linda - hey there , glad you have decided to start dating again! lets hope you find someone special! so annoyed at your surgeon - you need to know the outcome - i think he is a bit selfish!

dawn - hey there , as juliet says please dont apologise - we are all here for you at this time and even though your lesion is small its still such a worry. we are all here for you hun, . my sugeon said some of these lesions we are born with. they are like a birth mark on the liver. it takes something like contraceptives or pregnancy to trigger the growth. my 7cm one was not there 4 years ago and grew very quick. my other 4 little ones will be measured in 3 months once my liver has grown back and we will see if they have grown. my surgeon has recommended mri every 6 months. the bigger the liver gets the bigger the tumors grow. i had pain with my big one, severe mid upper abdominal pain - worse than childbirth as it was bleeding and a dull ache most days in upper right quadrant and in my upper back. i also lost weight(prob worry). all my bloodwork was fine. surgeon thinks mine was fnh but wont know for sure until we have histology reports in a few weeks. - hope this helps

take care all

thinking of you katie x x:angel:

LindaG40
04-05-2008, 11:14 AM
Good morning from California!

Dawn, I totally understand where you're coming from. There's not much known about hepatic adenomas, which is what I have, so it's understandable that you would have a lot of questions and not many answers. As for me, I don't recall having any symptoms prior to the rupture of my adenoma. Since there aren't any nerve endings in the liver, the pain will get referred to another part of the body, usually the shoulder. I had shoulder pain, gastric pressure, and then pain in my right side that was unbearable. I've never cried from pain (as an adult) like that, so I knew it was bad and went to the ER. I told my friends about Nessie saying her pain was worse than childbirth, which has gained me more sympathy from my girlfriends who have had children!

From what my research has told me, the cause of these is unknown, they happen mostly in women of childbearing years with long-term use of oral contraceptives (I was on the pill for almost 20 years). The men who have had them are due to use of anabolic steroids. Some women can go their whole life without having any problems with them (as seen in post-mortem studies). They are mostly benign and the chance of them becoming cancerous is very low. I can't remember the percentage, but the fact that there's a chance makes me a little nervous, so I try not to think about that part. They will usually stop growing once the OC's are discontinued, but the only way to get rid of them is to remove them surgically. Once they have been removed, they should not grow back. I was also told that once they reach 5cm or larger, they absolutely need to be removed.

It was thought that I had one that was 5cm, so I had been scheduled for surgery back in December. They had done three CT's and two ultrasounds over the previous months, which had determined my diagnosis. Liver panels were slightly elevated, but not much. I was hoping that my issues with weight would be related too, but my hepatologist told me no. He said liver function is usually not affected either, the only risk is rupture and bleeding out. Two days prior to my surgery I had another CT, and then the day before surgery my doctor cancelled everything saying it was smaller. I did a follow-up CT in February, and that showed two adenomas, and the hematoma from the rupture. My doctor thinks the hematoma might have distorted the view and made the adenoma seemed bigger, but since it had finally separated from the others, there was a clearer picture. He said to come back in six months for another CT. A couple of weeks later he called and asked me to come in for an MRI because they wanted a better picture of the tumor on the left side. I posted my results from that study, but I still have not heard from the doctor as to what he wants to do next (continue to wait or come back in).

I've thought about getting a third opinion, but most of the doctors that I've talked to and asked for referrals have told me that UCSF is one of the top facilities in the world, so I'm already receiving the best care. I guess I just need to continue to be patient.:(

I hope Katie is doing okay. I pray that she is as strong as Nessie and gets to go home early too! Thanks for sending the lily to her, Juliet. Prayers out to everyone else!:)

neens7982
04-05-2008, 12:54 PM
Linda...it never hurts to get a second opinion especially when you are dealing with your life!!!! But, then again, I have also heard the UCSF is an amazing hospital. Aren't they a level one trauma center as well? If you don't feel like things are progressing as they should, I don't think you should have to think twice about getting another opinion. I know UCLA has one of the top liver transplant centers in the world...at least that is only several hours away...

The only thing i was ever told to stop before surgery was any type of aspirin, etc. I did make a choice not to drink a beer or take any type of medication for a month before. I just wanted to make sure that my liver had every chance it needed. I did take a multi-vitamin though.

I know that my type of tumor was different than all of yours, but I do recall my doctor saying that if it was an adenoma, there was always a chance of it turning malignant...

It is interesting about all of these tumors and bcp's. For a hemangioma, there is no direct evidence either way that bcp's can cause these to grow. So, I was advised to stop them. However, when I did stop them, my tumor still grew from 2.5 cm to 7cm over the course of 4 years. I have two others that never grew and are still the same size they were two years ago. Very weird how my little booger just chose to keep growing. When I first found mine, I did have tumor markers done, but all of them came out normal to a huge relief.

I do think that bcp's need to provide better information regarding liver tumors. It needs to be something other than a little one liner blurb in the product info. It is crazy because there are benefits such as lowered ovarian cancer risk, but, what is the trade off?

I hope katie is doing well!!! Thinking of you girlie!!

dawnmn
04-05-2008, 03:00 PM
To all you great ladies-thanks so much for the quick replies to my post!! Gosh, you all are going through so much with doctors appointments,tests,waiting for results,etc. Wow! I know that at 1.4 cm. my lesion is too small to worry about yet. And if it grows, it grows, that's obviously out of our control with these things. I guess the main thing now with me is to try to watch my weight, in case that is a factor with the growth of theses things. Supposedly, I did not have this lesion in my sixth month of pregnancy(had an us at that time for some urq sensations that I thought was gallbladder-everything checked out ok, although the tech said she couldn't see everything 100% with all my organs being pushed upwards due to the baby.) No lesion was mentioned in the final report at that time. I shot up to 192 pounds in my ninth month of pregnancy, after having a pre-preg weight of 165. I was never heavier than 165 prior to my pregnancy, so you have to wonder about the weight factor, hormones, and these tumor growths, at least maybe with some women. My gastro clearly said estrogen was a major factor in the development of these tumors. I was on the pill on and off for many years, up until I was about 33 years old.(I'm now 41.) My ob asked me at my last visit if I wanted to go back on bcp-I said NO WAY!! Especially not with this lesion I have now. Even another pregnancy at this point would be out of the question, because I would be too afraid. Do any of you ladies have children, and do you think hormones from pregnancy contributed to your tumors? I'm blaming my little angel for the possible cause of mine!!LOL!! Love her to death, and would do it all again for her, even if my pregnancy did start all this! Hopefully everyone is doing okay, and we will hear from Katie soon. I really enjoy browsing and reading all your posts to each other, and I feel like a part of your group already. It seems like you all have been through a lot together, and have a lot in common with each other. It's interesting that you are all from so many different places, including Austrailia! Take care, and I will post back soon.

Juliet-I did work VERY HARD with WW, and it took me over a year to lose 45 pounds! It sickens me to see the weight slowly creeping back on, due to stress eating, but I vow to nip this in the bud again starting tomorrow!!

nessie1
04-05-2008, 03:32 PM
hi again

dawn, glad you enjoyed reading out posts hun, we really are all very special ladies and its so good to have each other. i am def not going back on BCP's. still dont know what my tumor was but either way i will not take the risk again. i have a five year old and i do know that pregnancy causes many tumor growths to grow. i love my boy to bits but am not going to do it again! i put on 45 pounds when pregnant which is quite a bit. well done on your weight loss mate - you should be very proud - keep up the good work!

neens - lovely to see you still check in mate, so glad your doing ok - how big are the 2 they left behind??
juliet - the peace lilly sounds beautiful - she wil be blown away by it!how are you feeling today?

linda- i agree a third opinion may be worth it.the pain of a rupture is horrendous and you dont want to risk that again. take care hun

im still not driving which is driving me nuts. im 24 days out now and doing so good. scar looking good again, all the scab has come off!i went food shopping yesterday instead of doing it online! i couldnt push the trolley so a friend came but nice to feel normal!going clothes shopping tomorrow for a couple of hours with a girlfriend and doing lunch.

take care all

thinking of you katie x

kt8889
04-05-2008, 04:47 PM
To Healthboard Ladies,

Katie wanted me to let everyone know that she is recovering beautifully. This is her third day in the hospital and predicted to come home tomorrow night. They have taken her off the morphine drip and prescribed to oral pain meds. I just wanted to let everyone know on here that she is doing very well. She has expressed much concern about all of you who have helped her through this difficult time. She also received the beautiful plant today you guys sent her. Not sure, how you found out, but thank you very very much. Please cont to keep her in your thoughts and prayers as she will be home soon. Im sure she has lots to say. Once again, thank you, for your support, she and I are very thankful.

Sincerely,

Will Renfrow (kts friend):angel:

bethegk7
04-05-2008, 05:28 PM
Katie -- that is amazing! You are an inspiration!!!

Juliet, you are amazing and thank you so much for what you did!

Dawn, I don't know if pregnancy makes these grow...my daughter is nine and I did not have these little friends 3 three ago. Or at least not large enough to be seen. I did take bcp for many years. Some people have experienced shrinkage after stopping bcp. Mine seemed to have blossomed since stopping bcp! Life is grand. Previously, when my doctor thought that the tumors were Focal Nodular Hyperplasia (FNH) he wanted to see me once a year. On my first annual check up there had been growth and he immediately referred me to a surgeon. The whole weight thing is news to me but makes sense. I have gained weight over the last 4 years. I tell you I hit 35 and began to fall apart! My thyroid has stopped functioning well so I am on medication for that. I have also getting allergy shots for the last four years and wonder about that. I guess there is just not a lot known about these things.

Neens and Nessie -- thanks for the pre-op info. I have been slowly making myself eat better and will stop drinking on May 1. I do enjoy a glass of wine in the evening but my liver is more important. Should help with weight loss as well.!

best to all,
Beth

digjpm
04-05-2008, 05:34 PM
Hello to all,
I havent posted for several monthes but continue to read the site daily. It is so heart warming to read the supportive messages shown by everyone. I have a 4.4 cm rt posterior lobe lesion and have known about it since 1-07. I will have a follow up in August with ultrasound. The information I have learned from all of you is so helpful. I watch and wait with anticipation and concern as some of you undergo procedures and or surgery and am so pleased to hear all goes well. The support you lend each other cant help but make a big differance. My best to you all.....digjpm:)

srwolts
04-05-2008, 07:01 PM
I am SO glad to hear that Kaitie is doing well. I look forward to reading her post on every detail about the surgery being that mine is coming up next Tuesday. You all still continue to amaze me each and every day. It is such an awesome thing to be able to come and read this board each day.

You are all in my prayers!

Stacey

granolawife
04-05-2008, 07:33 PM
Hello all...

I started another post "Focal Nodular Hyperplasia and Pregnancy...and elevated liver enzymes." Katie was kind enough to reply to me and I am so happy to hear that she is doing ok!!!

I am interested to hear from those that have had liver resection and how long the recovery process was. I am hoping to be able to embolize my larger, symptomatic lesion (7" FNH - pressing on the bile ducts causing obstruction), however I am not sure if that that will be an option. If not, I am facing resection. My husband and were trying to start a family and this has stopped our plans abruptly, so I am hoping to address this soon as no one will advise us that getting pregnant is safe. I have also been feeling sicker (nausea, diarhea, no appetite) this past week and my liver enzymes are climbing...I think these are "normal, expected" symptoms with this type of lesion and location?

I sent my medical records to Univ. of Pittsburgh and am awaiting a response after their conference this coming week as to suggested treatment.


Any feedback is so very much appreciated! I wish everyone on here the best of health!!! My thoughts and prayers are with you all....:angel:

kt8889
04-06-2008, 09:07 AM
Hello my HEROS!!!!!!!! I am still in the hospital, but I have my laptop and I had to post as soon as I could. Pain management was a challenge yesterday, so I could not. I finally got things under control last night, but I feel a sleep reading all of your post.
You are the most wonderful people in the world. Juliet, we are soooo much alike, I can track down anyone when want to, and yes, the beautiful plant made it's way to me. Everyone that comes in comments on it and I love telling people who it is from. You are all brilliant and we will all have to met some day!
Ok, details...surgery went well. I found out some details from my anesthesiolgist. She came up to check on me the day after surgery, so I asked her details. My surgery was done hand assisted laparoscopic. I have three tiny incisions, one that is about an inch bit and one that is around 3-4 inches long. I still have my drain tube in and a pain "purse" into the big incisions. I am still filled with air from surgery. My anesthesilogist said they filled me up with air the most she has ever seen. The took out my 9 cm + (bigger than a softball), my gallblatter and a small piece of my liver. She said I will have a lot of shifting going on, and yes I do. Everyone keeps asking if I have had a BM yet....hahah...I have not even farted yet. :D I am taking something, but it will be a couple of days.
I might be going home late today, but we have to get the pain stuff under control. Morphine makes me sick, so we are going to try to different pills that I can take at home.
Ok, I am going to have to come back and tell you more later, I need to rest a bit. I just wanted to say hello...well, honestly I wanted to type a book to you now but my body is not going to let me right now. I will be back later today. You all are wonderful and I am so thankful for each of you!
Hugs,
Katie

bethegk7
04-06-2008, 10:31 AM
Katie, you are amazing! Rest now and type later! You are in my thoughts!
Beth

nessie1
04-06-2008, 12:27 PM
hello

WOW KATIE!!!!!!!!!!!!!!!!!!!!!
so lovely so hear from you , im so glad your doing well. the pain mangement thing is quite hard - i had tramadols which were fab.so you have the "purse" thing that neens had - no epidural??. 9cm!!! thats big hun! glad you havent got a great big scar. will sounds lovely. i have been so worried about you but i knew you would be fine! hows the catheter! do you have central lines in neck?? glad you like the plant - juliet is amazing.
stacey - how you doing hun? not long to go now - at least me and katie and neens have been through it and that can help you. thinking of you hun x
juliet thanks for doing the plant thing - thats just so nice. how you feeling mate, yes sit ups did hurt me too and like you i am a very active person usually and is fairly frustrating at the moment as not much energy but it is returning slowly. i have got more of an appetite though which is good .

beth -sounds like you are doing the right thing by cutting out certain things. take care hun.

i woke up this morning to SNOW!!!!!!!!!!!!!!!!!!!!. ME AND MY SON WENT STRAIGHT OUT BEFORE BREAKFAST TO BUILD SOME SNOW MEN! it was great! cant believe it - its april and was 64 degrees on thursday yet snow today? my son is off school for next 2 weeks so not much rest for me! we are going out for a few days and round to friends etc but its gonna be hard as i get so tired. my hubby is only off for 3 days during the 2 weeks. i am currently dressed as a pyrate and me and my son are hunting for the hidden treasure in the house! - i look like a female jack sparrow!
anyway me hearties - got to go - treasure to find!!
take care x
nessie x

neens7982
04-06-2008, 02:58 PM
katie,

soooo glad to hear you are doing well! just remember, one day at a time! The recovery process is interesting....you'll have some good days and then maybe a bad one, but soon, those bad ones will get fewer and farther between!

hang in there girlie!!

kt8889
04-06-2008, 03:23 PM
Ladies, please post warnings when I need to grab my pillow to laugh...especially jack sparrow over there. Haha :D
Stacey and Beth, have you had surgery before? Beth, I think you have. I don't want to make either of you nervous about pain management, it as just been tricky. I did not have an epidural, I chose to try without, and I have never taken medications like these, so it has been hit and miss a little, but I think we have a plan that is working. If is keeps working all day, I will be going home this evening. I think i will sleep so much better in my own bed, you know? Nessie, you are correct about them cathether. i gotta go rt now. more later...
love katie:angel:

mharris107
04-06-2008, 10:41 PM
I know I do not know you well, but I added you my prayer list. I wish you well. I feel priviledged to be able to have such wonderful ladies to get info from. Your sense of humors are very uplifting. Your knowledge and diligence about your health is also impowering. I thought it was just me who gave my doctor a hard time and want to know all the details and options. I continue to read each day and look forward to learning more.

nessie1
04-07-2008, 06:58 AM
hey there

katie glad i made you giggle - laughing and sneezing is a challenge at first!! as you said ladies please dont worry about the pain management thing, you just need to experiment a bit. i didnt really like the morphine , but as i say tramadols were great. you sound really good katie im so happy for you. as neens said you get good and bad days but def more good.

juliet - las vegas is on! i would be so cool to meet you all - we would have such a good time - comparing scars!!!. sorry that you are stressed at mo hun -its completely natural. yes all the little things do get on top of you at a time like this. at least this week you will get your answers and you can then focus on surgery. i am thinking and praying for you mate. you are so right about the peace lilly - each one of you has given me a sense of peace just from sharing my worries - love you all.

mharris - nice to see you still read hear. take care and keep in touch

got to go now - games to play!!

nessie x

srwolts
04-07-2008, 10:26 AM
Hey KAtie! Yes, I have had surgery before. I had a c-section, a DNC and surgery to remove a kidney stone. I was told that I would be offered an epidural for my surgery next week and I think I am going to take it. I had one for my c-section and did fine with it. I remember a little bit of the shaking thing happening, but not any naseau. I am getting really nervous for next week, but I have to have faith that everything will go fine. I cannot have my done laproscopically, they have to go in with the bigger incision.

How long were you in surgery Katie? I know mine will be different but I am still curious!

granolawife
04-07-2008, 12:27 PM
Katie,
I am SO GLAD to hear that you are doing well!!! You are an inspiration to me!!! Thank you so much for posting details of your surgery. I am having a hard time wrapping my head around all of this and what to expect.

I should know late this week what the plan is for my treatment. The Pittsburgh docs said that they have only embolized a handful of FNH tumors, with mixed results. Apparently if the tumor is being fed by only one blood vessel, the procedure is remarkably successful and the tumor shrinks and dies. However if it is fed by many blood vessels, the result is not the same as they cannot be sure that they can embolize all of them. I guess you can try emboliztion first, then if it doesn't work you can do surgery, but that would mean several months of waiting for it to shrink from the embolization without knowing if it will work or not. For me, this would also probaly mean putting a stent in the biliary ducts to open them up while we wait, coupled with the fact that my husband and I want to start a family and are concerned about another delay -- I am almost 37 and he is 43 -- and we have had to put kids on hold for other health issues this past year. I think I am going to be faced with a tough decision as to what to do. I really want this GONE, but am very stressed and worried about surgery.

Anyway, I am SO HAPPY to hear that you are through this safely!!!! You remain in my thoughts and prayers!!!
:)

bethegk7
04-07-2008, 12:47 PM
Stacey, my doctor has strongly suggested the epidural as it will get you through the worst of the discomfort and then you can start mucking about with oral meds. I am a bit worried because with my c-section I had quite the reaction to the spinal. I threw up for 12 hours and itched like a fiend! So I am a bit apprehensive. You are in my thoughts as we approach next week.

Katie, I hope you are able to go home today.

Nessie, I love the pirate bit. Make sure that you do not overdo!!

Juliet, again thank you for your determination. That will get you through your surgery. I hope all goes well on Wednesday!

Granolawife -- have you asked how soon after a liver resection you can get pregnant? That may be the quickest, but by no means the easiest way!

Best,
Beth

kt8889
04-07-2008, 08:22 PM
Hello my lovelies! I am home and it is so nice to keep reading on about how you are all doing. It is very nice to be home, my mom is here to help take care of me, so I am very spoiled this week.
I wanted to write more while in the hospital, but I would get very tried quickly, so here I am. I have come home with pain relief pills and still no BM. Hahaha
...Nessie, how long did it take you? I am taking whatever they gave me, twice a day, so I am hoping to not wait to much longer. The air from the lapa. surgery is moving around today. I think I told you about all the air they filled me up with at surgery...today, I am a balloon with a slow leek. :D I am also going to try to wash my hair this evening with Will's help to help me feel a little normal.( the BF)
Juliet, you crack me up about my identity being 100%. If it were my choice, I would invite everyone of you to my home right now...but it is funny how the hospitals deal with that. I will have to thank my doctor's nurse for helping with that. She is great, and the plant you sent is so beautiful. I is still in the foyer, so everyone sees it when you walk into the house. No long now until your appointment. I am so sorry you are so stressed about it. Be brave for us, we know you can do it. Bring your paper and pen again, ask questions and write notes and say something to your doctor if you do not understand! We need to know everything we can to take care of ourselves, ok?
Nessie, so glad you are doing so well, you sound great!
Stacey- my surgery was 4.5 hours, but as you know, that is the easiest part for us. My surgeon took his time, because he was lapascopicly taking out my gall bladder, my 9cm. tumor a piece of my liver. There was no room to hurry through that.
Beth, go for the epidural and make sure they know you throw up with it, maybe they can stop that from happening. I iched the entire time due to the morphine, so there is not easy way.
I want to write much more, but I have to lay down. I am thinking about my friends and I would love to get together!
Hugs,
Katie

dawnmn
04-07-2008, 10:02 PM
Hi Katie-glad to hear your home, doing fine and have your mom to spoil you for a few days! Take advantage of that!! You are so brave-that was one heck of a surgery you went through!!! WHEW! Now at least you can relax a bit, now that the surgery part is over. Do you have to go for any follow up tests in the next few weeks, to check to see how things are healing? If so, what do they have to do? Hopefully you will be done with doctors,tests, and hospitals for a long while!! Get a lot of rest and start to feel better ASAP!! As for me, I'm headed to bed, even though it's only 9 p.m. My little one really poops me out! I will check in on this board as often as I can!! Hugs to you( and all you other ladies on this thread!!)

granolawife
04-07-2008, 10:48 PM
I just spent a couple of hours reading through more of this thread and I have to comment on what wonderful people you guys are! I am so glad that I found this! After reading these posts, I know that I can get through this...thank you so much, again, for all of the info you post on here. It is helpful beyond words.

Juliet and Nessie, it sounds like your lesions are around the same place as mine (left lobe - 7 cm). My other one (4 cm) is in the right lobe, but not bothering me. I had not had any symptoms until recently and they seem to be progressing. I have intermittent upper right quad pain -- almost like a pinching feeling -- that comes and goes. It is worse with exercise (I am a walker - 4 - 5 miles/day) and am having to go slower these days. The worst though is the nausea and diarhea...did you/do you also experience this? And of course, there are my elevated enzymes... that is particularly worrisome to me as I feel it's doing damage to my liver. Do/Did you also have elevated enzymes? I want this thing off of my bile ducts!!

question...I think that after I get through my treatment and my husband and I are ready to try to have kids that I am going to have to take progesterone to get/stay pregnant. Anyone have any idea if this will be ok? I was on bcp for 19 years before discovering these lesions, but I know that they were estrogen based. I am very concerned that someone is going to tell me that I cannot have my children naturally if I have to take progesterone. My OB/GYN already made me see a "high risk perinatal" dr. BEFORE trying to get pregnant b/c they considered it "risky". This was before I started even becoming symptomatic in the last few weeks -- I have not even mentioned to him what has been happening for fear he will tell me that I should not get pregnant in the future.

And no... I don't know how long I would have to wait to have kids after recovery. Any ideas??? I am hoping to ask the drs. that, among many many other questions, soon!

I know some were asking/talking about identification of the tumors. I actually have not had mine biopsied, but have been told by many radiologists that they think they are FNH -- I had several look at my MRIs. The larger one is "classic" FNH with the central scar, but the smaller one does not have a scar. They said that they often happen in multiples and that they really don't normally see two different types of lesions in the same liver, but I am a bit concerned that the smaller one could be an adenoma. How can they be so sure? Unfortunately the smaller one is in a very bad/difficult area to reach for a biopsy for fear they will puncture the lung. I am fearful of going through this surgery once for the larger one, only to have to address the other one sometime in the future. We will see what they say about that....This week can't go by fast enough. I am anxious for a plan!

Anyway, thanks for listening/reading!!!
Katie...I continue to pray for your healthy, safe, fast recovery!!! Keep the positive posts coming!!!
Positive thoughts and prayers to all!!!
:)
Arlyn

LindaG40
04-08-2008, 12:08 AM
Aloha Ladies!

Okay, so I'm not in Hawaii anymore, but I'll still use the "lingo"! I'm so happy to hear you are home Katie! You and Nessie are quite the inspiration for the rest of us.

As for me, I still have not heard anything from my surgeon. I'm at my sales meeting in Orlando this week, so my mind is distracted. I'm considering asking a couple of the doctors here if they have any suggestions on who I could speak to since they are big research-type people. It's interesting to hear the reactions from people. There are a couple of people who know about my situation, and they ask how I am doing with a lot of concern in their voice. The funny part was talking to a colleague who is a RN. I told him I had done the MRI, but was still waiting to hear from my surgeon. When I called them my "tumors", he corrected me and made sure I referred to them as "hepatic adenomas", and said not to make them out to be worse than what they are. I know that he meant they aren't a cancer death sentence, but they still are not a common occurrence!

I'm off to sleep so that I can stay awake during my meetings. Did I tell you that the hotel is inside the airport? Literally. The ballroom foyer overlooks airport security!

How about Las Vegas in the Fall? Think about it!
Linda;)

nessie1
04-08-2008, 04:39 AM
morning

katie - so glad your home mate. im so proud of you. washing your hair makes all the difference believe me! i didnt have a proper bm til day 10! then i never went for a further 2 days and then back to normal . i was taking a natural laxative which was very mild but i think i should have had something stronger! i was on the loo over an hour on day 10 and i called my step mum(who is a nurse) and was asking for her help?! i really dont know why i did that as she couldnt help me!! drink plenty of water and i also had 3 weetabix a day! i also remember rushing to the loo on day 9 thinking this was "it "and it was just a hissing noise like a tyre deflating!! i too had gas pain from when i had gyno surgery. its horrible isnt it. so glad you like the plant and like you i so wish we could meet. las vegas in the fall sounds cool to me. take it easy mate make the most of your mum! all done now!

linda - hi, i agree with juliet - my surgeon said they are tumors and even though its a scary word they are called that as they are not fluid filled. maybe you are right to get another opinion hun. i really dont know how your coping - you are a star!enjoy watching the planes!

hi Arlyn , as you can see from prev post my large 7cm tumor on right lobe was prob a FNH. i am still awaiting results. i have a further 4 on my left lobe. my surgeon also said that to have different kinds of tumors on one liver is very rare. i justpray that my big one was fnh then i know the other ones are too. if it was an adenoma then the little ones are prob that and another resection would have to be done to left lobe in the future. i wil be monitored either way with 6 monthly MRI's to watch the growth. i will not go back on combined pill butmay go on mini pill. i am seeing gyny person next week to discuss. when are you going to see surgeon mate? keep us posted . sorry dont know about pregnancy after recovery as i never asked that. x

beth - my surgeon didnt even give me the option with regards to epidural, he just told me i was having one, and it was great as no pain! - go for it hun. just talk through with them side effects. they gave me some kind of orange drip to counteract the shakes which was good.

juliet - hey there, good luck this week . i so hope you get the answers and date you have been waiting for. keep us posted hopefully we will meet in vegas!
dawn - how olds your little one?? mine is five - day 2 of half term break and im already bushed! its gonna be a long 2 weeks! take care hun , glad you like the posts on here.

im off now, take care all , i have quite bad scar pain by the evening which is telling me im doing too much so im having a lazy day round friends today whilst the kids play!

love you all x

bethegk7
04-08-2008, 10:35 AM
Linda, what a weird comment to make. These are tumors...not all tumors are cancerous (hence why they call these benign tumors). My sister-in-law had a benign tumor that killed her. Tumors are dangerous. One of our tumors could rupture and lead to death. This is a serious problem. If it were not, they would not be taking out large chunks of vital organs! Ok, I am a bit cranky today. I cannot believe your surgeon has not called you! I know exactly the hotel you are at! I always thought that was weird!

Stacey, I have to admit that I am curious to hear how you fair -- is that terrible? It sounds as if you will be having surgery that is similar to Juliet and I.

Katie, that is so great that you are home. Please let your mother pamper you!I know when I had my c-section they had to give me shots to keep me from throwing up and itching so I assume they will have a fix for the epidural should I get similar symptoms. I need to find out if there are different types of medication that are administered via the epidural. If so, I will let my surgeon know which one did not work for me!

I am off for an interview. Crazy time to being trying to change jobs!

Juliet, you will be in my thoughts today/tomorrow (so hard to figure when you are half way around the world).

Best,
Beth

granolawife
04-08-2008, 05:06 PM
Thanks for the info. Nessie. In what scenario would the Drs. think that you should remove your other lesions? What necessitated your initial surgery (symptoms)? I should hear from the Pittsburgh surgeon by Friday I think. They are having their "conference" on Thursday and will discuss my case then. Waiting is so hard...Friday can't come soon enough. I do have an appt. w/ the gastro dr. locally on Thurs. to determine whether they should do anything immediately about my obstructed biliary ducts. I don't think he knows much about FNH though. I was referred to him by a local surgeon b/c it's pressing on the ducts, but he basically said "I don't treat FNH". whatever...thanks, that's really, helpful, you know?!

Have any of you also had elevated liver enzymes with your lesions? What did your doctors say about that? I am very worried about it causing permanent damage to my liver.

life does throw you curveballs, doesn't it?! i wish so much that none of us were in this position, but i am very thankful to have found a group that understands...THANK YOU to all...:) I kind of feel that I am 'arriving late' to this post and am trying to catch up...thanks for your responses!
Katie, how are you feeling?

granolawife
04-08-2008, 05:11 PM
also, Nessie -- how long exactly has it been since your surgery and how are you feeling now? For what it's worth, from what I have learned so far, I do feel that your other lesions are FNH also... I have had more than one dr. tell me it's highly unusual to have more than one type on one liver! waiting sucks. please let me know your results....

sorry if my questions are repetitive. i have been working on sorting through this long list of posts!

bethegk7
04-08-2008, 05:40 PM
A friend at work sent this to me....and I pass it on to you all -- the brave ladies with whom I can share. If nothing else it should make you smile.

beth

*Happy IVGLDSW Day! * Today is International Very Good Looking, Damn Smart Woman's Day, so please send this message to someone you think fits this description. _Please do not send it back _to me as I have already received it from a Very Good Looking, Damn Smart Woman! And remember this motto to live by: Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other, body thoroughly used up, totally worn out, and screaming 'WOO HOO what a ride!' *:D

kt8889
04-08-2008, 10:32 PM
Beth, thank you for that last post.....I feel like I have given it my all this week! Good luck on your interview...I think that is great. You keep moving forward and improving yourself, even though all this stuff is going on, I am so proud of you love.
Juliet, good luck to you this week..I think as I am typing it is Wednesday for you, so you are having all of your tests done. We are all praying for you, I promise. Please let us know ASAP what you know.
Linda, I can not believe what that person said to you. My surgeon called mine a tumor, we have the same thing we think. Bless you heart, ask any of the doctors at you meetings, it never hurts to ask questions and please let us know if you hear anything interesting. I hope you find some time to enjoy the week down in Fl.
Arlyn, I am so glad you have read what we have typed, we were just in the same place you are right now and needed each other for information and support. As we keep saying, you are not alone and we are glad we can be here for each other. Thank you for bringing all of your information to us.
Nessie, your little details are so helpful to me. I am hoping I am getting my pain under control as of this evening, I am trying something new. My shoulder pain has stopped today, I think now the gas pain is all low. You need to remember to take it easy love, you are still healing. Have a nice day with friends. I know I am going to have a couple friends stop out by the end of the week, but just rest until then. I remember you talking about the cards you received from long lost friends and family and I have had the same, it is nice to hear from some people.
I am not sure if I will be able to pull off Vegas this year...I am so sorry, but I really want it to happen I am not sure about vacation time I will have. Let me look into things and lets talk about other dates too.
Stacey, when is your date...you are up next week right? Let me know if you need anything!
I am sorry if I missed anyone or anything, my meds are kicking in. Thank you all for being here for me! I am thankful for everyone of you!
Prayers out to Juliet! :angel:
Hugs,
Katie

cailea
04-09-2008, 03:17 AM
Hi from a newbie!

well I am another in the liver confusion club. I am a 31yr old female who fell sick at work. Five days later, I couldn;t take the pain anymore and ended up in Emergency.


Test showed a tumour on the liver (gallbladder working fine) about 10cm in size. The pain they say was due to a bleed. An X-ray, HIDA scan, ultrasound, CT scan and MRI later I was told it was a hepatic abscess. The plan was for a radiologist to aspirate it, which they refused to do because they didn;t believe it was an abscess *sigh*. After a week in hospital that was the result! haha

Anyway the specialist has done further blood tests (results pending) and has said this will be a case for a liver resection.


My frustration is the now knowing of what this tumour is and the suggestion that I may not know until they open me up.

Any thoughts?

Pretty sad and scared having never been sick in my life before!

cailea
x

nessie1
04-09-2008, 05:21 AM
morning

granolawife - hey there .dont worry about being repetitive hun as its a lot to take in. it been 4 weeks today since surgery. im doing ok. can cook and clean but not hoover or iron. cant drive yet but maybe end of next week. im seeing GP on monday to see what she says. im doing good to be honest - wasnt as bad as i had thought. i have very little pain now, off all pain meds just get tired. basically if my big one is adenoma then the smaller ones are also, we will then look at another resection in the future - not sure how long.if FNH just monitor 6 monthly for growth/symptoms. as for symptoms my big one gave me mid abdo pain, upper back pain, weight loss, breathlessness. all gone now though! glad you have joined us here hun , everyone here has been tremendous for me and we are all here for you. hope it goes ok this week.

beth - thanks for that - couldnt agree more! lifes too short and i am gonna make the most of it believe me! good luck on the job mate. x

stacey - how you feeling hun? havent heard from you - praying for you mate - take care:angel:

katie - glad your doing ok. make sure you rest lots ok, any BM yet?? im not sure of my hols this year yet - may have to be early next year for me too.
take care - so proud of you x


cailea - welcome ! like you my pain was due to a bleed in my tumor. they dont know what causes it to bleed but i does really hurt! they need to give you more info on what it is as there are 3 main liver tumors. they all react slightly different on mri and ct with/without contrast - have you had this done yet?? please dont feel alone , we at this thread have all gone through or are going through the same as you. its so hard and the waiting is awful. we have all been sad and scared and thats totally understandable hun. is it a transplant surgeon you are seeing as they are the best and know what they are talking about. let us know what they say mate, if you look back on this thread it will help you. i have just had a resection and so has katie so we can help with those details but first you need to establish what they think it is. have you still got pain? whens your next appt?
keep us posted hun :angel:

take care all - juliet thinking of you x

cailea
04-09-2008, 05:30 AM
Hi Nessie (and others) :)


The MRI states:

"The margins have heterogenous T1 and T2 signal. It demonstrated minor marginal enhancement following contrast administration, imaging findings are highly suggestive of a hepatic abscess" (left lobe of liver - 10cm)

A further small lesion adjacent to the gall bladder. This is of decreased T1 and mildly increased T2 signal. This may represent a haemangioma and it appears to be filling in following contrast administration".


I have no idea what any of this means. Last specialist appointment, I was asked if I worked on a farm and was sent for tests for Hep b and c.


I just know that the surgeon I am seeing is an upper GI surgeon in one of the bigger Melbourne hospitals - and he is working with on my case the Head of the Unit.

*sigh* I go back tomorrow morning - lets hope they have better news. In many ways I just want them to cut it out and then lets move on!! :)

cailea
x

cailea
04-09-2008, 05:31 AM
Nessie,

so glad your surgery went well and you are getting back to "normal". gives me hope!

Get well soon

cailea
x

nessie1
04-09-2008, 06:10 AM
hi again

caelia - sorry im not much use at this. i never actually saw my reports so i cannot compare . the other ladies on here are more knowledgeable so im sure they will be able to help. juliet on here, is in melbourne at the mo to have another mri and get her results and hopefully get action plan.she is also there tomorrow. when she is back im sure she will post and she may be able to help you more, perhaps she could tell you who she is seeing?
sorry i cant be of any more help hun x

nessie x

dawnmn
04-09-2008, 07:52 AM
Hi everyone-just popping in to say hello again!

Nessie-my little one is 3 1/2 and full of energy! Being an only child, I am her constant playmate so that doesn't give me as much time to post on here as I'd like, at least not until she starts preschool in the fall! Does your little guy demand a lot of attention? Very exhausting! Was it hard for you after your surgery to keep him wanting your attention all the time when you had to rest? That must have been hard, unless your fortunate enough to have a lot of family close by to help, which I don't have.

I've been reading all your posts on here as often as I can, to keep updated on everyone. I'm sure when it gets closer to my MRI date to check my lesion for growth, I will look to you all again for the complete support I know I will find here! I am going for tumor marker bloodwork on Saturday morning, and of course I'm worried about the results of that. With my lesion being so small, I doubt that this test would show much anyway at this point, but my gastro wants one done now as a baseline for when we redo the blood test in July. I guess that makes sense. Did all of you have this tumor marker test done, and were you all scared? This is the last test I'll need until my Mri, so it's just a waiting game right now. Take care everyone!!

bethegk7
04-09-2008, 09:20 AM
Hi all!
Katie, I hope you are resting and with each day getting a little better. I imagine you will have some ups and downs so patience is the order of the day.

Nessie, you need to make sure that you do not overdo!

Cailea -- welcome to the roller coaster. I started with a bleed that sent me to the ER. The first time was a mis-diagnosis (my gp did not read the report fully and did not see the part about tumors on the liver), the second they saw the tumors on my liver and the adventure began. At first they thought the tumors were FNH -- and it was let's just keep an eye on them. A year later and after some growth it was off to the liver surgeon. He did not think they were FNH but adenomas. Suffice to say I am scheduled to have all of my left lobe, part of my right lobe and my gall bladder removed on May 28. They often do not know what they little darlings are until they are removed. Katie can speak to the frustration of being told one thing and then another. Ask lots of questions and hopefully Juliet will check in soon and she can tell you who she has seen in Melbourne. You definitely want someone who know about these different rare tumors! Also, I think it is standard operating procedure to check for hep A, B and C. That is the most common form of liver trouble. In fact my gastro has made me get vaccinated for Hep A & B. It is a bit pricey (my insurance does not cover adult immnunizations!) but as he said you do not want to have any other liver issues if you can avoid it.

Dawn, I think we call have had our AFP levels (tumor marker) checked via blood draw. Just think of it as another blood test. And, you do want a baseline so try not to worry.

Stacey, you hanging in there? Linda any word?

Thank you all for your support!
Beth

sonic14
04-09-2008, 10:26 AM
Hello Ladies,

I have been reading your posts for sometime know. I finally posted and the next day the site was closed(huh). So I am going to give it another go. I have enjoyed your posts.

I became ill in Nov. 2005 flu symptoms and went to er with upper quadrant pain as well. Ultrasound found 3 tumors in liver one unstable and bleeding. I was sent to Mayo Clinic being told I might have cancer.

Two days later I was told I have either adenomas or FNH due to birth control (but not able to rule out cancer). They scheduled me for liver resection for a month out. However my insurance company requested a 2nd opinion. So I went to another liver specialist who with a nuclear medicine scan they confirmed FNH. With this the recommendation was yearly scans and moniter.

I have had pain on and off since, the liver specialist insists I should be asymptimatic. I had my yearly CAT scan in Feb. , a day later was sent for an MRI (no explanation). This was all done at my local clinic with scans sent to liver specialist. Which led to poor communication by using the middle man I learned my lesson this time. I was contacted a week later and told I needed more scans in 3 months but the tumors appear stable with no growth.

I got print outs for the scans so I could review myself. My tumors are 5.5 cm, 7 cm, and 1.2 cm all in right lobe of liver. The interesting finding is I know have an adrenal lesion 1 cm as well (does anyone know anything about??). So I think the follow-up may be in regards to this, not sure.

I will be due in May to see the liver specialist for these scans. So waiting nervously, after two years of feeling I could live with these foreign things in me I am feeling know maybe they should go. I am 34 years old and otherwise healthy.

Thanks for listening ladies and I appreciate any feedback that anyone has.
Good luck to you all.

srwolts
04-09-2008, 10:39 AM
Hi Girls!!

I hope everyone is doing ok. I am hanging in there, just getting more and more nervous everyday! My surgery is next Tuesday, the 15th. I have to report to the hospital at 6:30am for surgery at 8:00am. I am pretty scared actually, but I have to have faith and trust in the Lord that everything will be ok. I have a 2 1/2 year old, who loves his momma and I dread not seeing him for a few days. I actually broke down the other night before going to sleep thinking what if something goes wrong and I die, then my son will be so sad without his momma! I know something like that will not happen, but it's hard not to think that way!!
I have been told I have a 5cm FNH tumor on my left lobe. My surgeon says it's an akward shape & it hangs off a little towards my pancreas. Weird. I am having it removed because I do have symptoms and I am tired of hurting, being bloated, gaining weight and just not feeling like myself. He also said that all these different types of tumors can actually look alike so they really can't 100% for sure say that it is FNH. The biopsy came back and he is pretty sure FNH, but he cannot say for sure. So he left it up to me as to have it out, but his opinion is that if I am symptomatic, then it needs to come out. I also found out when I was having my biopsy done that I have 2 hemangiomas on my liver also. They are really small so I guess they are going to leave them alone. I just can't imagine leaving a golf ball sized tumor inside me, I think it would make me crazy in the long run thinking is it really not FNH, could it rupture???? So I believe that i am doing the right thing.
I am so glad I have found all of you ladies. No one truly understands what we are going through and it's nice to be able to talk about it and have people actually understand what I am talking about.
I forgot to also mention that when they were trying to figure out my pain, they also found that my gall bladder was functioning at 40% so that are going to take that out too.
Katie: What did you take to the hospital with you? What do you think I need to take? I think I may be in there a little bit longer since mine will not be done laproscopically. Did you have the abdomen drain? Any other lines?

Thanks for listening!!

Stacey ;)

kt8889
04-09-2008, 01:13 PM
Good Morning ladies,
Welcome to the new special ladies joining our liver club. I am still so glad we can help others, just by helping ourselves. Please feel free to ask anything...and I mean anything. You will notice that Nessie keeps checking in to see if I have had a BM yet after my surgery, we are really here to help with every aspect of this. ;) PS, no BM yet, I am eating fiber, drinking water and juice and trying to walk around the house...but no luck yet. :(
Arlyn, both Juliet and I have high liver enzymes. You can read through to get Juliet's, I just can not remember, but mine, my ALT read 311 and 415 in two different tests, normal in my test was 35-150. And yes, like Beth said, we have all had the tumor makers tests done, just par for the course. Please do not worry to much about all these test, the doctors can not tell what most of these tumors are until they get a biopsy and send it off to be tested in wax. You have to give that stress to God, and focus on the stuff you can control right now.
Stacey, so funny, I asked the girls what to bring with me just last week. I brought PJ bottoms to wear with the hopsital gown after I got my catheter out. I did not have an epidural, so they took my cath out the day after I think. I took so shampoo and lotion and toothbrush and paste. My robe and slippers, nice for when they get you walking. I brought some magazines, although I never read them, my family did. :) I also brought my ipod and never listened to it. While in the hospital, you will do a lot of resting and just taking care of yourself. As for drains, I had a drain in my side from where my gall bladder, tumor and liver piece was. It is important to make sure it keeps draining. I had oxygen for the first couple of days, and I had a local pain ball, putting medicine directly into the incision. You will have a little more due to the epidural, but you will be fine. One of my doctors residents, told me that if you have a full open surgery, it is very important to get the epidural, because they lift your rib cage up during surgery, so you need the extra days to heal.
Cailea, please check back soon, Juliet will be back and she can tell you who her surgeon is in Melbourne and you can talk to him. She is in good hands and we are hoping she will have a surgery date set up today or tomorrow. The worst part of all this is the run around and the unknown..ask Linda. She is the most patient person in the world and our hero! :angel:
Beth, thank you for the reminders today. We added oxycodone 5mg to help with pain management and it is helping. I might be a little more tired, but feeling better, so it helps. Last night, I was itchy all night. Not anything awful, just would scratch through out the night, so I though of you. I think I found my itchy meds. ;)...but they are helping, so it is worth it.
Nessie, thanks for the update. My boss emailed me yesterday and asked if I wanted to come to staff meeting this week, I was more than welcome. All I could think was, are you kidding me? I will call and explain, AGAIN, how major this was. I am also glad I am not the only one with vacation day issues, Las Vegas in Jan. or Feb. would be nice too. ;) We also might run into more one of us having to go into surgery, Linda is still in limbo.
Juliet, you are in our prayers love! Are you feeling like a pin cushion? Hang in there, I can not wait to hear how it went. :angel:
Wow I am chatty today...I need a nap now. :) Thank you all for being here, today is the first day that I am without pain, so I am a million bucks today.
Pray for a BM for me...ok, that is weird....but something has got to give soon.
Prayers out to each of you! :angel:
Hugs,
Katie

granolawife
04-09-2008, 02:24 PM
Thanks so much for your responses.

Nessie, I was very relieved to hear you say that it was not as bad as you had anticipated. I think the anxiety and anticipation is worse than anything physical that I may have to go through...but of course, I can say that because i have not yet been through surgery! I hope you continue to have a safe and speedy recovery.

Cailea -- I too had the Hep A,B,C tests after a blood test showed that my liver enzymes were elevated suddenly. All came back negative. I think they just like to rule out other potential causes of enzyme elevation (other than the obvious) so that they can be sure they are focused on the correct cause of your symptoms. I have also had tumor marker tests for the past 4 years since discovering my lesions. My liver enzymes had been totally normal for these past 4 years and only spiked sharply and suddenly recently, so I guess they thought I could have potentially caught a hep virus?

Katie, I can't believe that your boss suggested you might want to sit in on a meeting. People really are oblivious! one more question if you don't mind... did your drs. tell you that your liver functions would go back to normal after your recovery? I assume the liver is expected to function totally normally? Any idea how long this may take? I really enjoy a glass of wine here and there. :)

Juliet, I hope you are getting some answers and that your drs. are coming up with a plan!

Stacey -- Good luck with your surgery!!!!!!!!!!! WIll keep you, and everyone else here, in my thoughts and prayers...
Arlyn

nessie1
04-09-2008, 02:31 PM
hello again

katie you are very chatty today!! you are right what you said about the epidural and lifting of rib cage. they did tell me that and when i had my chest xray after surgery they said i actually have a cracked rib from surgery. i have had no bruising but it is quite sore. the epidural obviously numbed all the initial pain. still no BM hun!!!!! poor you!

sonic14 - hi there -glad you have enjoyed reading here . i was also told i should be asymptomatic but i did have pain, mine was a FNH 7cm and now thankfully its gone. they really dont know 100% til its out or biopsy as katie said. take care hun and keep us posted.

stacey- what you are feeling about the dying part is perfectly normal. you need to go through these emotions to prepare yourself. you know we are always here for you to vent those feelings that often we dare not speak out loud. as for drains you wil have one in your abdomen, an epidural, catheter and drips and maybe a central line in your neck. it all sounds far worse than it atually is. you will be fine and your little one will be just fine too. dawn asked me about my little man and how he is affected by all this. yes he is demanding and not being able to pick him up is horrible. i cant lift things for him and no play fights on the bed but he is doing just fine. he is a little older at 5, so at least i can make him aware of whats gone on. i have been really honest with him from day 1 and he is very understanding for his age. its so hard when you have young ones but that is where you need to ask for help from family or friends. i do not have a lot of family but my friends have been fantastic.
take care hun you are in my thoughts:angel:
dawn - dont worry about those blood tests hun , its perfectly normal and at least they have something to go by. take care.
take care all ,

nessie x

granolawife
04-09-2008, 02:31 PM
FYI-- For anyone else that is experiencing no appetite and/or nausea, I have found a good natural remedy -- Ginger Tea. It is really helping me and I have found it to be even better than anything I have bought at the drugstore.

mharris107
04-09-2008, 09:54 PM
Sonic: Good hearing from you. My issues started last Jan with flu like symptoms. After many tests it was determined that I had
6 x 3 x 4 cm that is either FNH or adenoma
2 cm are a hemangioma
and a 3rd that is 3 x 2 bcm ut due to my getting sick during testing they are still unsure.

My enzyme levels seem to be normal but I am tested every 6 months. I had 2MRI's last year and have another next month to look for growth. None have decreased in size since discovery.

I have seen 3 GI doctors. 1 liver specialist and 1 liver suregeon. They disagree as to the real nature of the type. My liver surgeon is the first one to use the word tumor with me. I shocked me the first time. It also shocked my husband. Walking into a transplant center ill prepared scared me. Looking at people who looked very ill made me scared. I wondered why was I sent here. I do not look like those people. My skin / eyes are not yellowed and I do not feel all that bad. It is just a bad flu I can't shake right.

I suggest you get copies of your results for all test. It gives you more knowledge and ability to ask questions. If you do not know a term I am sure the ladies can help or you can google it on line.

My pain is daily. It feels as if my liver is squeezing through my ribs. I have put in a few pounds (3 -5) in the last year. Not sure if it is age or my health. I had nausea daily but I now take bryonia alba to combat. Nothing takes the pain away altogether. My liver doctor stated that he could prescribe something but it would work minimally unless a narcotic. Who can live on that. I work full time and have toddler. I also have a husband with a huge appetite.

By the way, the pain is very intense sometime and my family can see when it is occuring. My husband has asked several times if I need to go the the ER and I say no. I have a great tolerance for pain and like to suffer in silence. Can anyone discribe what it feels like when you have a bleeder? I get pains so bad that I actually squeeled in a meeting.

My prayer and thought is that we need to educate others on what we are dealing with. No one I have talked to knows that taking BP can cause tumors on you liver. Why isn't this more well known?

Love reading all of the post. I wish all of you a good day or night depending on when you read.;)

Note: I made it through a pregnancy w/ issues. No one realized the pain and discomfort were liver related. Everyone attributed it to pregnancy.

LindaG40
04-10-2008, 12:15 AM
I finally heard from my surgeon today! He left me a message on my voice mail at home saying he reviewed my scans with the other surgeons. They saw the lesions, which are hepatic adenomas, and they did rupture and bleed. A couple of them look like they are smaller, so at this time we are going to wait six months and do another MRI. I will continue to take care of myself, exercise and eat a healthy diet in the meantime. This is a great gift and I want to take good care of my body.

Thank you all so much for your love and support, it has been absolutely amazing! I hope we can all meet up in Vegas, possibly after the new year. I will continue to pray and support everyone through their tests, surgery and recovery!:)

cailea
04-10-2008, 02:27 AM
Hey all,

Well it was another visit to the specialist today!

Blood test results showed no signs of Hep B and C. Also my tumour markers are normal so the surgeon tells me the likelihood of malignancy is very very low.

Plan from now is that I will be called in the next few days with a date for the op. He said it would be within the next 2 weeks (HELP!!!!)


They warned me they may remove up to 50%. currently the tumour is covering 1/3 and the other side of my liver is enlarging to compensate.

So a day of good news (no malignancy) and bad news (the op is going ahead soon) lol

Still unsure as to what it is.
________________________________________ __________________


I think in some ways I have a lot to be grateful for with the health system here. It was only discovered 3/4 weeks ago, so they are right on it

________________________________________ ___________________


I guess the question I now have is: what to expect with the op and recovery? I don't like surprises ;-)

________________________________________ __________________

granola and nessie thanks for your comments and support. This board is amazing! I have never heard of anyone with this medical problem and then.........here you all were.

Best wishes to all
cailea
x

nessie1
04-10-2008, 05:16 AM
morning

mharris - hi, sounds like a very confusing time for you too! so you have another mri next month?i too have a high pain threshold but when mine bleed i couldnt move at all - it was a cramp like pain - i could not even wiggle my toes for pain - worse than childbirth in my eyes and i was in established labour for 22 hours!! once you have your next MRI they may be clearer as to what the next step is. i do hope so mate. take care.

linda - hooray the surgeon finally came back to you !!!!!!!!!!!!!!!!! im glad that they look smaller this time - thats a good sign and no surgery for you - hooray! take care my love - enjoy life and hopefully we can all meet up - it would be so cool!

cailea - at least you have some answers! as for surgery myself and katie as you know have not long had surgery. it sounds like you are having open surgery as i did and im here for you hun. ask away any questions you want and look back on this thread as i have given lots of detail of my surgery!at least once its out - they will know what it is and no more pain. they certainly have moved quick with you mate im so glad. you are going to be just fine . please dont be too afraid and expect to have lots of different emotions over the coming weeks but we are all here for you :angel:

katie- well?? given birth yet???? :jester:
how are you hun? so proud of you mate . hows the scars and pain meds going ?? is will being good??
keep us posted hun x

nessie x
ps juliet - thinking of you x

sonic14
04-10-2008, 11:03 AM
Good Morning,

Mharris - thank you for your response. I definately can relate to you. I too often suffer with the pain in private, high tolerance as well and not wanting to make a fuss. I on some level have gotten accustomed to it believe it or not. Sometimes much sharper pain which can double me over but for the most part it is a dull achy pain. The first liver surgeon I saw said I would know if it was bleeding the pain would be quite intense (like childbirth) and to go to er immediately. She was referring more to a rupture. Because the first time I went to er I did have a small tear in one that had bleed which initially brought on the sharp pain I was feeling, they said before my release from hospital that it had stabilized itself. Are you just monitoring the tumors with doctors??? I agree about the education regarding bc, it definately surprised me. Good luck with this crazy journey.

Linda - Congrats! Glad to hear good news for you.

Cailea - Good Luck! It sounds like you are in good hands.

I also feel blessed to have someone to share with, I wish I would have known about this site 2 years ago. I have searched the web for any information I can absorb regarding these buggers. Not always a good idea, alot of mixed opinions out there. I can get alittle obsessive in my search when I have anxiety about the pain and am feeling a lack of knowledge regarding my health. thanks for listening.

Have a great day ladies!
P.S. My real name is Keri!

kt8889
04-10-2008, 01:35 PM
Hello All....
Linda, Congratulations, sounds like they are not going to push you into surgery just yet, and so glad you are going to continue to keep an eye on it. You better keep checking in with us, you are the queen of our group because you get to keep your tumor in for a little while longer! :D I think we will have to plan a trip for all of us the first of next year, so please plan all of you liver stuff accordingly. hahaha
Keri, well congratulations to you also....you are in good hands and are moving along quickly. I can not wait for Juliet to get back to us and you guys can compare notes. It is time for you to start giving us questions. Nothing is to personal or off limits. This is a big surgery and we are here for you hon. I think Stacey will be having the surgery at the same time as you.
Mharris, so what is your next move with all of this. I am sorry if you have to repeat yourself, I have been on drugs for the past week. ;) It sounds like you have done a lot of research, just please remember that without a biopsy, these tumors can be tricky, even for the best liver surgeons.
Nessie, no luck yet love. :mad: My goal is to beat your ten days, but I am at 7 now, ugh! And you really do crack me up, once again, I could have used a pillow reading your comment about giving birth, keep the laughs coming, it is good for me. :) So how are you feeling? I bet you are having a great time with your son on break, does he let you get a nap in if you still need it. That is what DVDs are for, right? ;)
Hey Beth, you hanging in there? Are you getting any of this nice spring weather your way? It is going to be rainy, but 65 here today, nice enough to open a window a little to smell the fresh air.
Well, I am feeling a little better today. I dried my hair after my shower and shaved my legs. It is amazing when the simple things make you feel so good. My scars are healing. The only one a little open was for the drain, it is only one inch, so I have to watch that one. I have two others that are one inch and one that is 4 inches, they were all closed with glue, so they are looking great. I think my meds are finally under control. I have never had to take anything like this, so I am glad I have figured out what works now. It is easier to get better when you are not in pain all the time. :angel: I am feeling blessed today.
Surgery question, I have a numb area just between two incisions of about an inch. Does or has anyone else had this happen?
Well, I think it is nap time for me. Juliet, I can't wait to hear from you dear, I have been praying lots!
Prayers out to all of you and hugs,
Katie

nessie1
04-10-2008, 01:55 PM
katie- glad you liked the giving birth comment!! believe me thats how it feels after 10 days and out pops a malteaser! :Dknow what you mean about shaving your legs - i looked like a man when i came out of hospital! now this numbness - i can not feel anything below scarline. basically from breastbone down to lady hair line, none of my belly button so the whole right side of abdomen. this is where they have cut the nerves and i was told can sometimes take 6 months to get sensation back. its soooo wierd, when im in bath cannot feel the water, cannot feel when i moisturise or anything. i am hoping it will return as mine is a rather large area. glad your doing ok , just take it easy.
im off out tonight with the girls for some pub grub and a gossip - no booze though!!
take care
nessie x

srwolts
04-10-2008, 02:34 PM
Ok gals I need some help. I am having surgery Tuesday and of course I have come down with a little cold. If I don't get rid of this soon, they won't do my surgery. I know that I cannot take ibuprofen or Tylenol, but does anyone know if there is anything I can take for this cold?

Stacey

bethegk7
04-10-2008, 05:01 PM
HI Stacey, have you tried cold-ez or even just vitamin c drops?

Linda, great news!

Cailea -- I know it seems like they are rushing but it is better than waiting 12 weeks like myself. I only have 7 weeks to ago. Some days I wish that I could have surgery tomorrow. This will give you less time to stew! Hopefully Juliet will be back soon although I think she mentioned her doctor's name in a post awhile ago.

Katie sounds like you are making progress except for that lovely bm! I hope you are able to empty out soon! I am hanging in there. Knowing how well you and Nessie are doing is so helpful!

Nessie, enjoy yourself. It is encouraging to hear that you are out and about at 4.5 weeks!

Keri and MHarris -- I have regular pain. Not bad but constant. The two times I had some bleeding were terrible. I cannot wait to get these things out!

Best,
Beth

kt8889
04-10-2008, 05:04 PM
Drink water, juice, water and more water. I would call and ask about taking lots of Vit C also. That is the only way I know to help push it along. Also try some hot tea. I love the green teas made by Lipton, the citrus is my favorite. I have tried the EZ Cold before and I think it helps a little, but you might want to call you doc about that too, it has a lot of zinc in it.
You poor thing, I hope you get all better very soon, this surgery stuff is such an emotional ride, I know you do not want it to push back at all.
I will say an extra prayer for you Stacey.
:angel:
Katie

mharris107
04-10-2008, 11:25 PM
KT - my next step is more blood test, visit liver doctor, another MRI and then they will decide. No one seems to agree on what is going on. I am just tired.

I also have had two benign lumps from my breast in the last 10 years (I am under 35). I have mammograms, visits with (liver and breast) surgeons, blood tests, etc. every 6 months.

Good luck with recovery.

cailea
04-11-2008, 02:05 AM
Hi Juliet,
Sorry to hear you are having a rough time, especially with the diagnosis.

As I have said in previous posts my surgeon also is unsure as to exactly what it is but has ruled out some: malignancy (pretty much ruled out), Hep B and C etc.

I got a disc with all the scans (except the MRI) on it. The diagnosis from each was varied, the most common is adenoma but I initially they thought it was an abscess, thankfully they decided not to aspirate it!!!


My surgeon thinks it is irrelevant (in my opinion) what it is, just that due to size, symptoms, possibility of future pregancy or the chance it may become malignant.....he thinks it is much better out of me.

I am happy to share personal details regarding surgeon etc but would prefer to keep these private via e-mail. Not due to the lovely ladies on here but people surfing these boards.

He is nice, very matter of fact but with a sense of humour. He will be operating alongside the head of the upper GI unit. I have faith in them both.

Take care and hang in there

cailea
x

granolawife
04-11-2008, 07:14 AM
Juliet,
I'm so sorry to hear about your frustration and can totally empathize. I have had similar experiences with local drs. - I have seen many - and even felt that I knew more about my lesions than some of the drs. I have seen. Eventually I decided to send my records to non-local drs. for answers and a plan for treatment. I do think that the more opinions you can get, the better, regardless of how confusing and frustrating it may be. If something you're told doesn't sound reasonable to you, or to another dr.(!), I would definitely continue searching for an opinion that you feel comfortable with!

I had a frustrating day myself yesterday -- went to see a new GI doc who suggested that he wanted to do a colonoscopy and endoscopy to search for the cause of my recent nausea and digestive issues (of particular disturbance, it was a dr. that my local surgeon referred me to after telling me that I have a biliary compression issue from my tumor's growth into the ducts). I was like, um...no, I don't think that's going to be very helpful. How about exploring the issue of the tumor pressing on my bile ducts?! I'm not a dr., but it is my body and I'm not letting anyone talk me into something that doesn't sound reasonable to me.

Good luck over there!!! I hope to hear that you have a good plan in place soon!

bethegk7
04-11-2008, 09:45 AM
Hi Juliet, I am so sorry! I was getting worried when you had not posted in a few days. This is such a roller coaster. I have fretted a bit about getting a second opinion from another surgeon. I think that I will definitely refrain from that! My local GI doctor was absolutely sure that it was an FNH. The radiologist from my second MRI(I do not have a copy of my first MRI) absolutely thought it was a FNH so my GI doctor said it was an FNH. When I went to the surgeon it took him less than 2 seconds to say it was absolutely not an FNH. So, adenoma it is. Regardless of what it is, it is growing and it needs to come out. I would say the same holds true for you Juliet. Yours is growing and hanging dangerously off the liver...it needs to come out. Although it would be better to know exactly what it is I think you just need to pick which surgeon you feel more comfortable with and have the surgery. the emotional stress is not worth it! It is a leap of faith to trust someone to take a chunk of our livers out!

Hang in there!!

Cailea do you have a date yet?

Stacey, feeling any better?

Happy Friday!
beth

sonic14
04-11-2008, 10:18 AM
hi everyone,

Wow it sounds like many of us have struggled with is it or isn't it. Same experience for me one doctor said adenomas one convinced it's FNH (who is right), One wanted surgery, the other wait and monitor. Which now doc #2 wants more scans in May after 2 years of waiting and see.

Well it sounds like persistence and educating our selves is the true key to taking hold of our health.

Stay strong Cailea and Juliet!

x
Keri

srwolts
04-11-2008, 10:27 AM
Hi everyone!

I am actually feeling a little better this morning. I am drinking hot green tea and sucking on vitamin C drops like it was candy. Thanks for all the advise.

I can sympathize with the fact of not knowing exactly what is growing inside us. I even had a biopsy done and although they believe it's FNH, they still feel they cannot be 100% certain until it comes out. With me having symptoms, there was really no doubt that I was going to have it out. I am scared for Tuesday, but I am sure everything will be fine. I can handle the recovery even though I know it will be hard, I am more than prepared to take it on. I just want to wake up from the surgery and go "WHEW I MADE IT".

Thank you to everyone!

Stacey

nessie1
04-11-2008, 10:42 AM
hi
just a quickie today -

juliet - mate i really feel for you. i dont know if this helps but i agree with beth. mine is hopefully a FNH. it was hanging off the right lobe and i had symptoms as you do. for peace of mind I made the decision to have it removed and i would do it again. if my smaller ones grow and the same thing happens i will do it all again just for peace of mind. my surgeon did not make the decision for me which was hard but i know i have done the right thing. please take care and tryand have a good weekend. whatever it is if you are unhappy then i say get it gone, or if you are happy to wait and watch and if thats right for you then do that. no one can make the decision but you honey and its so tough. take care :angel:

stacey - not long now mate , glad your feeling better, take care:angel:
sorry guys but got to go and fetch my son from a friends,

speak soon
nessie

kt8889
04-11-2008, 12:21 PM
Hello all...I have not had a BM yet and I have sent my mom to the drug store to see what we can do about this. I have been taking Collace, twice a day from day one, and still nothing, but it is time. This is going it be a fun day...I can tell. ;)
Oh Juliet, I am so sorry. We were all hoping you would come home with a date for surgery and a plan. I am so sorry you felt like you got the run around again. We have all been there and we all feel for you. I was really hoping your emotional roller coaster was over, bless you heart. I agree with Beth too...you just need to see who you feel more comfortable with, talk to as many people as possible and understand, no one will know what yours is until they get in there, and for you, that means just taking it out. Also, I agree with your radiologist friend, my doc was having me do a lapabiopsy so he could take it out..he thought mine was an adenoma originally remember? Take a deep breath hon, we will help you sort this all out emotional if you want, but I think you will have to make the choice Nessie and Beth had to make and be in charge of you body. We will support you in whatever you choose and we are here for you.
Stacey, so glad you are feeling a little better. The hot green tea is good isn't it? I live on it through the winter. You sound like you are getting ready mentally for surgery. Nessie and I will both agree, it is really not that bad. You are drugged up enough to get through the rough spots and the other times you are just focused on getting better. The hardest part is getting to surgery day, so just take care of yourself this weekend. Please let us know if you have other questions or if we can help in any way.
granolawife, it sounds like you are in the same boat. I agree with you thinking that if one doctor says your nausea problems are due to the tumor growing where it should not be, well, take care of that issue first. If you are still having problems after your surgery, that explore more. It helps to be in charge of what is going on, doesn't it?, We are proud of you!
Nessie, so glad you are a busy lady once again, you are my hero today. I have a date with the bathroom today. :D And thank you for sharing about your numb area, it is a little scary feeling, isn't it, and yours is much bigger than mine.
Well, I best go, time to get going to my date. :D
Hugs,
Katie

mharris107
04-11-2008, 06:35 PM
kt: try some black seed for bm and assist in liver function. I know it is frustrating to have a normal function be such a bad part of your recovery.

Do the rest of you have issues normally when it comes to bm? I have issue w/ timing and urgency when I do have to go. My pain is also worse when I need to go. Just curious.

My prayers are with you lovely ladies! Have a great weekend. I will be with my investment group and they are also a great group of ladies who make me laugh.

moderator2
04-11-2008, 06:48 PM
Hello,

We need to limit threads to 80 posts or sixty days to avoid slowing the server.

Members should each start their own thread for their own support topic.

Thank you for your understanding and cooperation.





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