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?
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
Last edited by patriciamia; 07-07-2008 at 10:16 PM.
Reason: just some extra thoughts
ashley - glad to see you're still doing so good. loveley to hear from you ,
teganowl, my surgeon did leave the decision to me and when i eventually told him i wanted it out he said " thats the right decision"!! why didnt he just say that in the first place!!! they have to show you all options i suppose. my insurance were fine too.
katesela - oh boy ! your mum is obviously just really worried about you hun, as for the soy thing - i dont know as i do eat meat, but if your happy you can get all your nourishment from what you are eating, and a dietitian has said its ok then that cool. as for alcohol i stopped drinking 1 week before surgery. i wasnt really drinking much anyway but did have a "last supper" the week before surgery where i did drink far too much! excercise is fine as far as im aware just take it easy. mine did rupture and i have no idea why it did. You will be fine and get your mum to have a read on here if it makes her feel better. She is just worried about her little girl! My dad was the same.
Patricia, I am so glad to hear that you are through your surgery and on your way to recovery!!! How are you feeling?
Teganowl, I live in Tampa. Where have you gone for treatment/opinions? I ended up going to Univ. of Pittsburgh to be treated b/c I could not find a local Dr. that I was happy with. I'm happy to share any info. that you may want! U of Pitt. was amazing. They have a whole liver center there & did the very first liver transplant ever.
I am still feeling about the same -- searing pain when I breathe deeply, and pain when I wake up in the morning which seems to slowly get better as the day continues. (again, the "flatter" I end up when I sleep seems to make the pain worse) Overall though, I am feeling much better. My digestive issues are gone and my back spasms seems to be resolving as well. I am taking Advil for pain. Trying to stop researching on the internet & freaking myself out.
Katesela, my surgeon told me to stop drinking alcohol and taking aspirin/advil 2 weeks before surgery. Other than that, there were no restrictions. I think the purpose of that was because they can cause the blood to thin. Thinking of you here in FL...
Ashley, you are amazing...I am so happy to hear you are doing so well!
Nessie, congrats on day 7!!! keep it up!!! hope you are feeling better...
Beth, hope you are feeling better each day!
Juliet, how are you feeling?
Caliea, are you out there? How are you doing?
Katie, your holiday weekend sounds heavenly!
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!
Katesela, I had to chuckle at your post about your mom. I went through the same thing with my mom right before my surgery was scheduled and I thought I was going to go crazy! I went to my dad and asked him to talk to her and tell her to back off before I snapped at her. She did a lot of the same things to me, and now that I think about it, my whole family (aunt, cousins, brother, sister) gave me a hard time on Thanksgiving because I had a glass of wine with my dinner. Thank God I had my dad sitting next to me, he poured me a second glass when I asked for it!
Here's what my hepatologist told me about everything:
- alcohol: you're going to want your liver to be as healthy as possible and ready to heal, so cut back or cut out all alcohol for now (this was six weeks before I was supposed to have surgery). As stated above, I still had a couple of glasses of wine on Thanksgiving. At the time the doctor told me this, I was having a glass of wine every night with dinner.
- exercise: I had already experienced a rupture, so I was told not to run or do any exercise that had me jumping around a lot. The adenomas seemed to be unstable, based on the rupture, so we didn't want that to happen again. I was swimming, walking, and doing yoga at the time, and he seemed to be okay with it. Listen to your body.
- diet: if your doctor and nutritionist are okay with what you are eating, then you should be fine. My surgeon told me that post-op I would need to eat a high-protein diet, a lot of meat especially, because the liver is trying to regenerate. But I'm not a vegan or vegetarian, so I didn't have a problem with that.
- Advil: I used to take Advil for pain all the time, but had to stop when my adenoma ruptured. I didn't want to risk bleeding out, so I switched to Tylenol. My doctor did not have a problem with that.
Again, once you have surgery scheduled, the doctor will let you know what you can and can't do pre/post op. The main thing I focused on was getting my body to be as strong and healthy as possible so that my recovery time wouldn't be so bad.
One thing my doctor did not mention, but the nurse practitioner at hospital admitting told me, is to stop taking fish oil vitamins a week prior to surgery. I had listed all meds and vitamins in my file, but the surgeon did not say I had to stop anything, just not take them the day of surgery. I am only taking OTC Claritin, multivitamin, fish oil, and vitamin B1 (it helps prevent mosquito bites and reactions).
And so here I am, a year after my rupture and six months after my surgery was cancelled, and I'm doing fine! I don't drink wine every night with dinner, but I will have a glass a couple of times a week (more, depending on the occasion!). I am still swimming 3x/week, yoga 2x/week, and then I spend my weekends hiking and kayaking. The important thing is to live a healthy lifestyle. I'll see how things are going when I go back for my CT in October, but until then, I'm having FUN!
Pre-surgery I didn't drink at all, but I don't drink normally very much at all anyway. As for vitamins, I cut out the Omega-3s as well. And all the medications like ibuprofin that can cause you to bleed. The docs said to get a lot of protein and I drank a lot of water.
Just a post-surgery question. Every 5-hours or so I get this strong pain -- right around my liver that feels like the strongest heartburn, but much lower, like I said around where I now know my liver is -- it only last a few seconds and then subsides -- what is this? Did anyone else have this -- it's mostly at night when I'm lying still.
Patricia...I am so glad you are doing well. I don't think it is unusual to have weird twinges after surgery....but it wouldn't hurt to ask the doc either! Hang in there! There are better days ahead! I am so glad to hear you had laparoscopy done. I'm sure you'll recover in no time. I bet you feel so relieved to have the whole surgery behind you. Still praying for you!!
It is interesting about alcohol....I know the liver is a very forgiving organ. But, when I have a beer, I swear I have uncomfortableness in my liver area a little while later. Maybe it is psychosymatic...who knows. But knowing that I have only my little left lobe, I have cut way way back. I have had two beers in the past three months. Has anyone else had pain after drinking?
Does anyone get a sharp pain in their right shoulder? I do and my tailbone is so sore from sitting in the recliner that I cannot stand it. I tried to lay on the bed but cannot get comfortable at all. I still get the blues but try to take it one day at a time. We had company last night so I am tired today. My inscision is sore and hope to be able to wear a bra again someday. I have a large chest and it is uncomfortable. Eating is getting better and things are starting to taste good. I see the doc Friday for removing stitches/staples. So nervous I will pass out. My legs are back to normal size and I can make a fist now so I am doing better. It is good to remind us of the little accomplishments that we made. I only take half of a lortab every 4-6 hours. That is pretty good. I also use the heating pad. I hope that is okay because it helps my back.
Nessie, So proud of you for quitting smoking. I quit four years ago while pregnant with my son. Keep hanging in there it does get easier.
Ashley, You sound like you have had the fastest recovery. I am happy for you since you are so young. Keep it up brave girl.
Beth, Thanks for all the encouragement it helps me more than you know.
Juliet31, Hope you are doing well and I also miss being able to cuddle my husband but we are still early out of surgery. Hope things are getting better for you as well.
Katie, you say some amazing things that help so much. Thanks and right back to you.
Take care everyone else and whoever joins this awesome board. I plan to see the originals on Oprah soon.
much love hugs
Tiny, I had really bad shoulder pain for the first 2 or 3 weeks after surgery. It slowly went away thankfully. I never had it before the surgery like some others here did. Not sure what it was all about, but it's completely gone now. I wrestled with a lot of back pain until just this week from spasm and non-use of the muscles. Your body is not used to being in such different positions. Advil helped...My doc said to expect "normal aches and pains associated with healing". I wasn't sure what that meant, so I was taking my temperature quite a bit as well to make sure that I wasn't running a fever. Patricia, I think that twinges would fall in the "normal aches and pains" category...unless really severe or you are running a fever. Never hurts to ask your Dr. though! Hang in there you guys!
Katie, i did not ask my Dr. about the breathing pain. I think it is subsiding slightly and advil is helping. I am filing it under the "normal aches and pains" category for the moment and trying not to obsess too much!
Im 3 weeks after surgery and I too have back pain and pain when I take a deep breath on right side remember that the stitches are inside as well as out so we are doing so well at this point. I too cant sleep on side and hate sleeping on my back how sore are you in the morning after being in the same position! I cant cuddle husband and jump if anyone comes close had small walks last weekend on a camp site with hubby and someone playing cricket hit the ball straight at me but luckily hubby intercepted!!I was horrified. Think Im doing too much to be honest cooking doing dishes pottering round the house but also feel that this does help recovery to some degree. Thinking of you and really wishing you a speedy recovery, this is the biggest thing to happen to me but we will feel so much like new people at the end of the journey.
So glad to hear from you and that all went well. I know that you will not be feeling great at the moment but Im at week 3 and feel Sooo much better although limited by the reality that I dont want to overdo it!!Sometimes a pain will pull me up short and in England you can wait four to six weeks for pathology my consultant is speaking to me next monday which will be four weeks after surgery as he is no longer sure it was FNH. I reassure myself that if it was sinister I woudnt be here now as Ive had this dreaded thing for nearly three years. I found soups, fruit, codeine and back rubs help!! Oh and a sense of humour although laughing hurts!You sound such a lovely person as does your partner and remember we have so much to be grateful for, when I was in hosp I was with some great ladies who were so much worse than me, it gives you a wakeup call doesnt it.
However onwards and upwards we will soon be over the worst and Im going to write a play about my experience dark comedy me thinks!!
Lots of love fellow prisoner Clairexxx Jolly
Claire, you made me laugh out loud! "Fellow prisoners!" Hang in there and yes, you are doing to much. This surgery was the first big medical thing to ever happen to me too and it is hard to stop and let yourself heal, isn't it? Please just rest, the time will go fast and soon you will be back at it full force and wishing for the days of rest. Juliet says, you only have one chance to heal, she is a wise woman.
Tina, the pain in your shoulders is normal. You have air in your body that wasn't there before and it has no way out, so it is rises in your shoulders. I think walking hunched over and sleeping on your back doesn't help either, so just hang in there, it will improve soon, I promise.
Linda, is the pain still there? Please call your doctor is it gets bad, I worry about you dear!
Juliet, are you out there? I am worried about you too. I am hoping you are home and just getting a lot of rest, but it has been a couple of days. Don't make me come down there!
Nessie, you are my hero! Keep up the good work. How is it being back at work, are you feeling ok?
Beth, hugs to you!
Cailea, how are you going love? Have you heard from Juliet?
Patricia, I don't remember sharp pains,but it has been a while. I agree with you about the internal healing, you had muscles and stuff sewn back together so take it easy and call if it gets to be to much. You are going to be surprised how quickly you feel better. Just keep getting rest! I know that I am not up to my normal energy level yet, even three months out. I just get sleepy quicker than I used to, and that is all the drugs and stuff that is in our bodies and normal. They say it takes 6 months to get back to normal.
Arlyn,I think my first test were high too, but it has come down. My liver surgeon swears our high liver enzymes has nothing to do with our tumors. I don't know if he is right, so many of us had high enzymes, or if it is our angle calling attention to our livers. I know my GP is going to keep an eye on them from now on every year. Just keep an eye on things, it is just a blood test thank goodness.
Neens, so glad you stick around with us, you are a wealth of information!
Ashley, you are the young rock star of the group and I love having your great energy here, keep checking in with us love!
Well I best get back to work!
Hi all. I met with the surgeon today, and I feel so much better now! All the doctors had been saying it would be a more risky surgery because the adenoma was on an artery, but he said he didn't consider it a particularly difficult one. He was pretty funny, he said it would be hard for *them* to take out cause they're not surgeons. He was very confident and really made me feel good about this.
Also, he can do it hand-assisted laproscopically, so that's a great surprise! He's done over 400 of these and said he hasn't lost anyone yet. The scheduler is going to call me back today to confirm, but it will probably be July 28. I wish it was sooner, but oh well. He said 3-4 days in the hospital than 4-6 weeks recovery. It's on the left lobe, so the whole left lobe will go and the gallbladder too since it's in the way. 19 days and counting!
Good news, Katesela! I'm so happy that it can be done laporscopically! Yay. It's so good when you have a confident surgeon. Every time I started to freak out I would meet with my surgeon and his confidence would put me at ease. So happy for you. As I am sure you know the waiting is the worst part. Compared to the waiting, recovery is cake. Love to all! I'm up more today and actually ventured into the car with my mom for a sandwich.
That is great news and the sooner you get it done the sooner you can work on recovery. I am doing so much better and I am not even two weeks out yet. I also got dehydrated and had a set back. I had to have open surgery. They took 55% and my gall bladder. Now I am investigating some different pillows to help me sleep more. The 28th will come fast but that is best. You are going to do so great. I am taking only a half lortab every 6 hours so that is pretty good. My niece came over today and is helping take care of the kids. She is twenty and in college. This way I give my mom a break. I am going to be thinking about you and I am so glad you trust your surgeon. Much love and hugs!
I am new to this and I am so glad I found it. I am a 3o yr old female with 2 little children and have been on birth control for many, many years. I went in for a pain on my lower right side, and they found 4 lesions on my liver. I have had two Ct's, an MRI, an ultrasound, and a nuclear scan. They still do not know what it is. My liver functioning test came back good, as well as my tumor marker blood work. I am so scared that it is cancer, although two doctors are telling me chances are it is not. They are unsure if they want to do a biopsy due to the risks of bleeding. In addition, my chest hurts so bad. My primary care doc says it is stress. I look foward to hearing from anyone in my shoes and how to get through this. All I do is cry and think the worst!
If you read some of the earlier threads you will see that we all have got through it. First step is getting with a liver specialist. They will know what is needed. I thought cancer right off myself. Then I just took each test one day at a time. I had all of the tests that you mentioned. My liver surgeon said it is a hepatic adenoma and then when it went back to the lab he was right. I had open surgery June 26 and not even two weeks out I am eating well and starting to get more things I can do for myself. You will get through this as all of us have. Glad you found the board because it saved my life. The ladies on here are amazing and I hope their story gets told on Oprah one day. Please post any questions that I can answer. I am here for you and it is hard time. I cried everytime I looked at my kids. I had to have something for nerves from the family doctor. Above all just take it one step at a time. You are going to be okay.
This is my first post. I googled FNH and found this health board. I have been in pain on and off since last October and had my first emergency room visit in January... no insurance so no one really did anything. In May I finally got insurance through my new job and went to a specialist after another emergency room visit, I have been thinking gall bladder this whole time and so was my primary doctor. The digestive specialist found spots on my liver and I have been through CT's and I had a liver biopsy... no cancer. I have been diagnosed with FNH and last week my doctor did a Hida scan for my gall bladder and it seems to be functioning less then 1%. I went to my liver surgeon today and I am scheduled for open surgery Monday July 14th at 7:30 am... to have the lump removed from the left lobe of my liver and also my gall bladder...the surgeon says I will be in the hospital for about 5 to 6 days and recovery after that will be about 4 to 6 weeks. I really don't have any family around... and a friend (male) that will be there somewhat... my 20 year old son that lives up north will be down to help a little bit. My boss says I will have my job back when I totally recover but no pay... I am scared and already are unable to work this week due to pain.... alot of chest, right under the ribs on the right side and I have alot of right shoulder pain and sharp stabbing pains... I am just miserable but I am expecting to feel a lot worse from what I read...on the board....next week after the surgery. I am really scared. I am 47 years old... and ride a Harley.... (just started a year ago).. and I know it will be along time before I do that again...lol. I have raised 4 children and helped with grandbabies...but they have all moved away now. I have gone through a full hysterectomy while raising the four children and I find myself mostly alone now... have some friends... but ya know how that can go... just feel alone and scared and don't really know what to expect..this has all happened so fast...but at least it is not cancer right?