Liver Transplant for Primary biliary cirrhosis (PBC)

How tough was it on your son and how long was his recovery? What state?

I am new here but have stage 4 cirrhosis alcohol , after so many mri, fibro scans , and my doctor doesnt like to answer questions. I am to the point where my knees hurt so bad when i wake up or sit down at night hard to walk, Sounds like a lot of new stuff in the works, hope they find something to help. I wish this pain on no one . He gave me 5 years at most in Jan 2018, just seeing if anything out there since I cant get any answers except off the internet, thanks for any replys , guess the only thing I havent had is jaundice ! Mike

I also have cirrhosis and my liver threw off 3 caesonimas. I did y90 twice which seems to have killed them. Are you on a transplant list, Do you know what your MELD score is? Fo you have varices or acuities? I think I’d find a good hepatologist, it’s not good that your doc won’t answer you.

@mikej, Welcome to Mayo Connect. Having cirrhosis and not being able to have a meaningful conversations with your doctor has got to be frustrating. This is not what we expect when we have questions.

I find it helpful to take someone with me when I have questions or get a test/scan results. I find that an extra set of ears is helpful as well as someone else to ask or intervene for me when I need answers. Do you have anyone who can go with you?
Mikej, I would like to ask, if you are being treated by your primary care doctor (PCP) or by a gastroenterologist? How often do you see your doctor?
What question would you like to ask?

@digibson, I seem to have lost track of time and and I want to ask you how you are feeling these days? Are there any updates about your condition and the results of treatment?

Thanks for asking Rosemary. I'm doing fine. My MELD score runs from 6 to 7 and the carcinomas at last CT scan were dead after the second Y90 treatment. I have a three month CT tomorrow so praying they're still dead and that my liver hasn't thrown off anymore. Had a long conversation with my Hepatologist a month or so ago and she recommended no transplant. Because all my numbers are so good and carcinomas apparently dead she said they would do more harm than good because I have some little heart issues. Heart issues nothing to worry about. Soooo... as of now the world is rosy, just praying it stays that way. I'll update on the CT after Thanksgiving. Blessings, Diane

Diane, I’m glad that you responded with this positive update! I will be thinking of you as you you undergo your routine CT tomorrow and will whisper a prayer.

I will look forward to your next update after Thanksgiving.

Thank you , No seeing a gastroenterologist but his favorite line is don't read to much on the internet , trying to get in with SLU here in St.Louis , I see him about every 6 months but they found a spot on my liver about 2 months ago and have to get another mri in a few weeks ! I guess my questions would be is there anything new out yet , I am 59 and he says would never get a transplant cause yo many people are waiting , and I am not sure I would anyway . Is there any symptoms when things start to get real bad other than what you can read , I had a epidural Thursday , it my knees are so bad is there anything out there that would help with the pain , I have a lot more but this is a great start , thank you so much ! Mike

No I don't think was never giving that option , I had varices , my last FibroScan read 244 17.6 , I don't drink and try and eat healthy , in good shape but getting some fat around my belly but is what it is , thanks for replying ! Mike

Hi Mike, honestly, I’d suggest a new gastroenterologist. I was in stage 3 liver cirrhosis due to PBC when I was diagnosed at 60. I had a liver transplant a year later. Have you been on the UNOS website? There are good resources on it. A good gastroenterologist will work to keep you healthy and if your meld score rises close to the point of becoming eligible to be on the transplant list they will work with you to be referred for a transplant.

You’re doing the right thing to stop drinking, watch your diet, and stay as fit as possible.

Are you being regularly monitored for varices since you’ve had them? This is important, as they can burst…happened to me twice. Be sure to have a plan for this. My friends and office mates knew the signs and what to do. Other issues can include ascites…gaining a lot of water. Again, try to find a doctor who will work with you. I went to a teaching hospital. My gastroenterologist was a resident, she was excellent.

I took Gabapentin for pain, it’s processed through the kidneys, so not as hard on the liver.

Many of us have been where you are…lots of questions, concerns with the unknown. Let us know how you progress with finding a different provider.

Athena