Liver Transplant for Primary biliary cirrhosis (PBC)

Wow great info , how were the rejection pills ? He told me that would kill me faster than anything.yes I had varices in 2018 , middle of night didn't know was throwing up blood , 6 pints they had to bring me back , it was a bad night and your do right I hit the floor and knocked me out , good idea ! I am gonna look at that web site now , thank you so much for replying , Mike

Good morning Mike,

I’m sorry you had the varices experience already. I had mine just two months after I was diagnosed. First one at my office, second at home. Almost died and spent a total of three weeks in ICU. If you don’t have a blood pressure monitor, it would be a good investment. And, be aware of indications of a drop in blood pressure…which I guess you unfortunately discovered like I did. The second time mine burst, I turned white and almost fainted, but didn’t vomit blood like the first time.

The medications are life saving of course, but certainly have side effects like many medications. I think each of us has their own experience of adjusting to the meds. Working with my transplant team I’ve been able to reduce mine. I still have some effects, but these are also magnified by my autoimmune diseases.

There’s a great Mayo Connect blog for transplant recipients you might check out-
https://connect.mayoclinic.org/blog/transplant/

Here’s a couple that specifically discuss medications:
Transplant Medications: Everything You Need to Know https://connect.mayoclinic.org/newsfeed-post/transplant-medications-everything-you-need-to-know/

– Transplant Medications 101: Q&A https://connect.mayoclinic.org/newsfeed-post/transplant-medications-101-qa/

I wrote this one recently. For me, I have found that adjusting my diet works well to help reduce at least some of the impacts of the medications
- What's On My Plate - A Transplant Recipient Perspective
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/whats-on-my-plate-a-transplant-recipient-perspective/

My best, Athena

Wow great info , yea when mine burst 2 time I threw up it the floor and knocked me out , my girl friend got me talking but by then 6 pints were gone , don't remember that much other than my head hurt from hitting the floor ! Your talking meds after the transplant right ? Is there anything to take before, my joints are absolutely a 10 on pain level , my back is messed up bad so that causes a whole set of other problems , I am so glad I found this site so helpful , I am making app today to go to SLU for different opinion. Wish Mayo was close ! The only thing I take now is a supplement and a few vitamins , I do take a pill for the muscle cramps , when they happen I know nothing around me the pain is so bad . Thank you so much for everything I sure appreciate! Thanks Mike

Can I ask 1 more thing , how big was the life change after , I am thinking a lot but I might be wrong , I own a horse ranch and I am so busy playing catch up , I don't know what I would do if was down for a period of time ! Thank you

Mike - I’m with everyone else. Get a good Hepatologist. Which is a liver specialist. Mine has saved my life.

Yes I have a appointment with SLU and I hear good thing about them , be nice to have a person instead of a machine how I feel about my doctor , thanks !

@mikej, Fantastic that you have an appointment! Are you saying that it is an in-person appointment?
Mike, as you prepare for your visit, have you thought about starting to make a list of questions that you want to ask?
When is your appointment? What questions do you have about preparing to see this new specialist?

Excellent news Mike! I think having a better provider will make a lot of difference.

I’m currently taking 6 mgs of Tacrolimus (down from 8 just after my transplant in August 2020), 1,000 mgs Mycophenolate (down from 2,000), and 300 mgs Ursodial to help control Primary Biliary Cholangitis (the autoimmune disease that gave me liver disease. I also take Gabapentin and methocarbamol, to help with neuropathy and muscle pain.

You should talk with your new provider about potential pain medications. I was given Gabapentin for pain associated with liver disease as it’s processed through the kidneys. That’s why I take it for neuropathy now instead of other meds. But, you definitely want to stay away from ibuprofen and other meds that do a lot of damage to the liver. I do some joint relief creams and exercises which help some.

It’s tough though and I can definitely relate as my back pain gets up to 7-8 most nights. Gabapentin is good for general nerve pain, but not muscle. Methocarbamol doesn’t do much either, but they both help me sleep.

Your provider will tell you about good supplements to take, probably magnesium, which can help with cramps. Electrolytes are good to take as well to reduce cramps. When you have to take lactulose, let us know…we can give you our advice!

The best thing is to eat well, keep your weight down, walk and exercise, and keep your teeth and the rest of your body in the best shape possible. This will help your liver. As your liver progresses to get worse though, you will need to plan. The month before I got on the transplant list I had to resign my full time job. I continued to work some part time hours, but spent a lot of time lying down and resting. You’ll probably need at least a part time caregiver to help you manage medications, cooking, and emergency situations. You may experience “brain fog” which leads to confusion. So, just like varices, you’ll need to know the symptoms as it comes on.

As Rosemary has mentioned, think of all your questions, and I recommend you write them down. I got a steno pad to keep all my questions and info in. Doctors are busy, so the more organized you are, the more benefits you will receive from your visits.

Wow I have learned more here in 3 days then 2 years with my doctor , the first meds you mentioned I don't know but I use to take gabapen, I have frost bite in my hands and having a hard time with that , my muscle spasms stated about 6 months ago and they are almost paralyzing .I own a horse ranch so I am always busy long as I can get up and moving can make it through most of the day but like now it's 8.00 at night and my knees are so bad it's hard to walk . So after reading everything it's not if it's gonna go bad it's when ? I didn't know if it could be like 10
Years or 1 month , now I am looking forward to seeing new doctor , thank you so much nice getting some answers ! Mike

Oh after being on here for 3 days I have a whole page already , like I said before this is the best thing I have done , thank you so much ! Mike