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Old 07-10-2008, 08:16 AM   #31
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samantha7777 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Yes, my surgeon works out of the liver center at Piedmont Hospital in Atlanta GA, and he is suppose to be really good. I have a lot of pain and really can't eat much... it seems to be worse when I don't eat though. My large FNH or lump... still unsure what you call it... mass..is 5 x 7 cm and then there is another one close to that size... on my left lobe and smaller ones on my right lobe... I believe they are taken the ones out on my left lobe and leaving the ones on the right lobe. My 20 year old son said he would come down to stay with me today and will be here.... being that he is your average 20 yr old.... I don't know how much help he will be...LOL.... he is a bit of a slob and I know I am sounding picky but... that is going to drive me crazy...LOL> I would much rather have a man in my life that loves me and wants to take care of me... sorry I am whining... but I feel so lonely and the guy that I kinda date.... tells me to stop whining... I know he says it trying to cheer me up but I just want to be held and told I am going to be ok. I am in bed all of the time all ready... I get so tired and dizzy and sick feeling... so I am hoping that after the healing time...this will all go away and I can get back on my Harley and ride....LOL.

thank you all for the welcome and I believe I will be on this a lot.... I didn't know that there were so many that have this stuff. I have also been told that liver cancer is VERY rare to start in the liver... and that was my saving grace information when I was waiting for my biopsy results.

I will keep everyone updated on the surgery progress.... I went to the surgeon to just get my gall bladder out thinking that was all he was going to take.. a quick surgery and then was told... a 5-6 day stay with a 4-6 week recovery time.

Everyone: does anyone know if I can get short term disability or some type of financial help for the time off of work? I have nothing through my work... just curious and very worried.

thanks and you are all in my prayers.

 
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Old 07-10-2008, 10:00 AM   #32
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katesela HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

My surgery got moved up! It's Monday July 21st. Less waiting, yay!

 
Old 07-10-2008, 10:04 AM   #33
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ccantrill HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Thanks everyone for your words of encouragement. But I had a few questions for everyone. I am ssooo confused. Both, my radiologist and gastro doc have said they would not remove them and to do a biopsy is too risky???(my largest one is almost 4 centimeters) When you guys say liver doctor is that a gastro doc or someone different? But I did the nuclear test yesterday and am waiting for those results, and I hate all this waiting!

 
Old 07-10-2008, 03:09 PM   #34
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samantha7777 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Quote:
Originally Posted by katesela View Post
My surgery got moved up! It's Monday July 21st. Less waiting, yay!

That is great Katesela.... one week after mine... I will keep you in my prayers.

I am having just a terrible day.... sorry... but if I can whine.. I guess it will be here.... I can't believe men.... the guy I have been seeing just told me that we are just friends...and that he might go fishing this weekend... my last weekend to even go do anything..... I guess it is just designed for me to be alone.... through this... I just wanted something more from him I guess... I know I don't know any of you women... but I have no one else to talk about this with.... I called him back and told him not to bother driving me to the hospital... he said "don't act like a 2 year old"... and told me to let him know Sunday night and that he can't handle hearing about my surgery anymore and that he wants to be alone when he is stressed and worried.... I just need to forget about him... but I do need him to drive me.... and to pick me up... I just don't have many others that will. However a girl friend of mine said that if no one is going to stay in my hospital room for ...at least that first night.. that she will come stay with me..... I am just so afraid to be alone through this.... ya know.... I have always had my children around me and my 20 yr old didn't show up or call..... so I am just feeling sorry for myself.... but this outlet here on this board...seems to be the only place I can whine and might get some understanding.... I guess everyone thinks..since I don't have cancer that this isn't that serious of a surgery and that it is no big deal... but I am still scared.... sorry to vent like this but I don't know where else to turn.....

thank you all for listening
Sam

 
Old 07-10-2008, 03:41 PM   #35
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samantha7777 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Quote:
Originally Posted by ccantrill View Post
Thanks everyone for your words of encouragement. But I had a few questions for everyone. I am ssooo confused. Both, my radiologist and gastro doc have said they would not remove them and to do a biopsy is too risky???(my largest one is almost 4 centimeters) When you guys say liver doctor is that a gastro doc or someone different? But I did the nuclear test yesterday and am waiting for those results, and I hate all this waiting!


A gastro doctor is different then a liver surgeon. My gastro doctor referred me to this liver surgeon in Atlanta and he is the one telling me to have this surgery.... mainly because it is causing so much pain. So that is why I think he is wanting it or them out... plus they mentioned something about it is stopping blood flow.

I hope this has helped a little.

Brightest Blessings
Sam

 
Old 07-10-2008, 05:31 PM   #36
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kt8889 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Carrie, Sam is correct, the gastro guys are different that the liver specialist or surgeons. I did a search in Phoenix and you can ask your doctor if he knows anyone at Banner Good Sam. They have a liver transplant unit and these doctors see this stuff all the time. They will be more likely willing to do the biopsy or operate. Many times, all the tests in the world does not tell them what your tumor really is. I even had a biopsy that was wrong the first time around, so hang in there and keep pushing to get with the right doctors.
Sam, hang in there. You have women praying for you all over the world. We know this is hard and very stressful, but it will be ok. As for the disablity, I really don't know, sorry.
Juliet, where are you?
Katie

 
Old 07-10-2008, 07:52 PM   #37
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samantha7777 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Thank you Katie.... prayers will be most helpful. I have good moments and then bad moments.

I will keep all of you in my prayers too.....

Brightest Blessings

 
Old 07-11-2008, 10:03 AM   #38
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nessie1 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

hi

katie - hugs back to you hun x xx x
juliet - hello there??!! u ok!????
katesela - yey not long now!!


sam ,You are not whinging. men always accuse us of whinging or moaning but really they just cant be arsed to listen. i so feel for you mate, he sounds like a bit of a knob! you need this weekend to do whetever makes you happy. just try and chill and before you know it you will be back out on you're Harley!! Cant believe your son hasnt turned up? it doesnt matter whether you are in a serious relationship or not - men are just plain wierd!! they just dont understand??They also react very differently to us in a crisis. they just "clam up" my man did and it really peed me off. I was like "stop being so selfish and try and help ME for once. I moan about my man all the time!!! its so hard for you and you are bound to be so worried mate but really you wil be fine. use his offer of a lift and perhaps once he sees you in hospital etc he might realise you need help. i wish i was there!!
take care !
nessie x x

 
Old 07-11-2008, 12:52 PM   #39
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katesela HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Some more questions - sorry, I think I'm going to have a lot these next 9 days!

My pre-op appointment is on Monday. They mentioned a chest X-ray, blood work and EKG. Is this also when I meet with the anesthesiologist? Or is that not until the surgery day itself? Is there any reason not to get an epidural? Will I see my surgeon at this appointment?

I'm starting to get more nervous again. The surgeon was so confident and made me feel great about it, but now all I keep thinking is that he hasn't looked at my MRI yet. He told me he looked at the CT but was having trouble getting the MRI disc to work on his computer. What if he looks at the MRI and realizes the surgery is more complicated? And that he can't do it laparoscopically? What if he NEVER looks at it and goes in and something goes wrong because the CT was deceptive? I know, too much what if'ing, but I can't make my brain stop. I was up till 4 am last night.

 
Old 07-11-2008, 05:09 PM   #40
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neens7982 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

katesela: it's okay to be nervous. i didn't meet with my anesthesiologist until the day of the surgery. but i didn't have laparoscopy either. I didn't have an epidural, but I did have a little medicine ball in a purse and then these tiny little tubes that administered medicine directly to my incision. It was great. I am a total wuss for pain and I couldn't believe how comfortable it was. They took the little tubing out like on day three or four and I was fine. I still can not believe how little pain I was in for such a huge incision down my abdomen. An epidural would probably be nice too! Usually, when you get the CT/EKG/blood work..you won't necessarily see the doc unless they said so. You will be fine my dear!! They days leading up to the surgery are the hardest, but hang in there! Everything will turn out fine!

patricia: I am glad to see you are getting out and about!! how do you feel now?

samantha: hang in there! you will need some help once you get home. So hopefully your bf will come around and realize it. If not, maybe your girlfriend or some family can help. It is hard to get around by yourself and you'll be tired. Men are so funny sometimes...but it could be he is scared and doesn't know what else to do. We are here for you though!

nessie: I am glad to hear of your smokeless life!! good for you! how are you doing? i'm going to get my iud out in the next couple of weeks. i still have two hemangiomas on my left lobe, but they'll just monitor them. so keep your fingers crossed for me!

kt: How are you??

Love to all you brave ladies!! Hang in there!! Linda, Beth, CCantrill, Tiny....and so many others!! Praying for you all!

 
Old 07-11-2008, 06:07 PM   #41
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tinyt3 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Hello,

Nessie Great job on quiting smoking. That is so fantastic. You are a strong lady and I knew you could do it.
Juliet How are you?
I got my stitches out today and it was not at all bad like I thought. I see him again in six weeks. I pulled a muscle and I am very sore. It has been a rough day with severe shoulder pain. Did anyone where one of the supportive belts and did it help?

To all who had surgery keep up on recover. Those approaching surgery you will be through it fine. I was so nervous that i lost 12 pounds before surgery. Sleeping is the hardest part for me.
Take care everyone
TinyT

 
Old 07-11-2008, 11:17 PM   #42
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LindaG40 HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Tiny, when I had my stitches out from foot surgery, I was sooo nervous! But then, when they actually did it, it just felt like plucking hairs out! Glad to hear that it wasn't so bad for you after all.

Neens! Good to hear from you. Please keep us posted as to how you are doing, especially now that the iud is coming out.

Katesela, I was scheduled to have surgery on a Friday. I went in on the Tuesday prior for a CT, chest x-ray, ekg, pre-op appt., etc... My surgeon didn't call me until Thursday, the day before surgery, to cancel everything! The doctor that I was dating at the time was a little upset that he made me wait so long! Since he is a surgeon himself, he said my surgeon should have had the results from radiology the same day, and I could have avoided a lot of extra tests and stress. Oh well, live and learn.

I think if this ache in my side keeps up, I'm going to call my doctor and let them know about it. It's not constant, but it is happening.

Patricia and Carrie, you are in my prayers...please feel free to share whatever you need to with us. Take a look at some of the previous posts, we are not afraid to share anything, right ladies? We've discussed our parents, children, spouses, boyfriend's, lack of boyfriends

Please know that you can always turn to us for love and support. If I was there, I would give you a big hug!

Linda

 
Old 07-12-2008, 09:47 AM   #43
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teganowl HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Quote:
Originally Posted by kt8889 View Post
Hello Friends,
Katesela, Your mom loves you and is just trying to protect you. ( I am a Mom of a 15 and 18 yr old) My doctor, the director of the liver transplant unit at University of Cincy, told me, you don't have liver disease, you have a tumor, so you are fine. I went to Napa Valley, CA, the week before my surgery and yes I did drink. Not to much, because I could not take any advil if I got a headache, but I drank. You can run, jump and everything normal up until the day of your surgery. Just no advil or aspirin 10 days before surgery for blood loss. Your surgeon will tell you what you can and can not do.
Patricia, so glad you are doing well.
Arlyn, did you ever call your doc about your breathing pains?
Nessie, so proud of you dear!
Juliet, hope you are feeling ok! Check in when you can! I will be putting new pictures up tonight.
Beth, I hope you are enjoying yourself and just so busy. Enjoy your time off.
Cailea, where are you love? Did I miss a post, or have you just not been around?
Tina, one day at a time, sounds like you have a lot of support there.
Linda, hugs to you!
Ashley, you sound so good! I am doing really well! My long weekend did me good and I am very happy to feeling so good. I realized something else. I no longer get heartburn since the surgery and I no longer wake up to go to the bathroom at night. I used to wake up 2-3 times a night and I haven't since surgery! I know they are very little things, but it is different and nice!
Teganowl, do you have surgery scheduled or are you still finding answers?
Well, busy day, have to run, you guys are the greatest!

Hugs,
Katie
I FINALLY have a diagnosis-FNH. I did a HIDA scan at Tampa General on Tuesday and the surgeon confirmed. Said I should go off my b/c completely now and repeat CT scan in 6 months. No surgery scheduled as both specialists and the surgeon don't think i need it. I am not necessarily in agreement with them but I guess now that I have a diagnosis it makes me feel better.

 
Old 07-12-2008, 09:51 AM   #44
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teganowl HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Quote:
Originally Posted by patriciamia View Post
Hi everyone,
Thank you again for all the good wishes. Still feeling good if a little exhausted
Yes Teganowl (sp), I had to get through a couple of docs who did the wait and see approach, don't get in car wrecks, don't work out, don't twist too suddenly, don't fall, the surgery would be elective, etc. and then I went to a liver surgeon at our research hospital who said the surgery was still up to me, but told me because I was young, the hemangioma would continue to grow and the surgery could get more complicated if I waited. Still my decision, but he was on my side unlike the other docs who didn't seem to mind if I lived worried about a rupture. And in pain and worried about pregnancy.

As for the laporoscopic -- my hemangioma was located on the edge of my left lobe and when they took it they took 10 percent of my liver with it. They were careful to leave as much of the liver as possible and minimal blood loss as possible -- 8-hours -- and a whole team of doctors worked on me -- I am told -- to remove piece by piece

But yeah, I had to look to find a doctor who was willing, because everyone else said just wait a few years. How y'all doin?


Patricia

p.s. and because of the nature of the hemangioma and all of the risks liver tumors cause to our health according to this liver surgeon it was no longer elective (in his book) -- it's not like it's plastic surgery
Yeah, it's not that i'm planning a pregnancy but if I were to get pregnant it does concern me that I have these "lesions". My oncologist is the ONLY one who thinks that surgery would be a good thing for this. And I do work out, i need to as i'm about 225 and the doctors are telling me to loose weight so not working out isn't an option for me. How are we supposed to "not get into car accidents" and things like that? It's like they want us to hope that nothing happens to us but if it does then we might be in trouble.

 
Old 07-12-2008, 10:32 AM   #45
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patriciamia HB User
Re: Adenomas/FNHs/Hemangiomas (x9)

Katesela, all your worries are totally legit, up until they had me on the pre-op table I was worried my surgeon had not seen the films he was supposed to, but really at some point you have to realize and have faith. There is a whole team of specialists there just to treat you. They have seen everything (eventually he will see the MRI) and he will know exactly how to treat you and perform the operation. As for the anesthesiologist, I met his PA on pre-op day, I didn't meet the actual anesthesiologist until the day of surgery and he totally reassured me -- in the end I was glad for the epidural -- it was minimally uncomfortable going in -- the real discomfort hit a couple of days after surgery when I reacted to the medicine with major nausea after they removed it. But I would recommend it because it made the day after surgery totally tolerable, but it's totally up to you -- and how do you feel about your anesthesiologist when he speaks to you about its benefits. All the worrying up to the surgery is totally normal. I was a wreck all the way until they wheeled me in and put me under. But you will get through this. We all have. You are all in my prayers.

Neens, it feels so good to be up and around. And this rain here in NM is fabulous, no. My dad is down in Mesilla and brought me so much produce from his gardens and orchards. I hope you're well.

Samantha, I will be thinking of you on Monday. I hope everyone else is well.
Patricia

 
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