Liver Transplant for Primary biliary cirrhosis (PBC)

Mike, I like to use the the Mayo Clinic Patient Care and Health Information link as a reliable source of up-to-date information. I wish that I had known about it when I was diagnosed with a liver disease. I want to share it with you. Here is the direct link to Liver Disease that includes: causes, risk factors, complications, diagnosis and tests, lifestyle, and resources for further investigation.
https://www.mayoclinic.org/diseases-conditions/liver-problems/symptoms-causes/syc-20374502

As you prepare for the first visit, I see that you are already making a list of questions. Now is a good time to begin to collect your medical records, if they have not already requested them.
When is your appointment? How far will you have to travel?

My main problems now are my sciatic nerve It stops me all day long , bleeding and bruising looks like I walked into a fan , gonna read more tonight and my app is 2 weeks and it's only about 45 min from me which is nice , on my 2 page of questions ! Thank you

Bleeding and bruising are common as liver disease interferes in the production of proteins which results in bleeding. I’m sure your doctor with have you take prescription iron.

Be sure to get access to your new hospital’s portal so you can view and download your appointments, labs, test results, and doctor’s notes. I keep everything organized in different folders on my iPad. If you don’t already have your emergency info, contacts, medical info, meds list, etc. together, I’d recommend it. You might also consider getting a medical tag as well (there’s a great Connect discussion on this).

I’m glad your appointment is so soon! Keep taking down those questions!

Ok what is a medical tag , guessing like a dog tag ? I in process of gathering everything I can get my hands on , Thanks Mike

Yes. There’s some, like Road ID, where you can register your information in case you end up in an accident or emergency situation. The medics know to contact Road ID and get access to your medical info. As I live alone and also travel a lot for work, it was a valuable precaution.

Here’s a link to the Connect discussion -
https://connect.mayoclinic.org/discussion/transplant-medical-bracelet-or-necklace/?pg=1#comment-626648

Is that the best one before I get into this and start reading , I use to see that commercial on tv , I have fallen and can't get up lol , if it wasn't gor my Gf at the time I wouldn't of made it , Thank you Mike

One more thing which I haven't heard much about is supplements, is there anything good out there , it seems like someone likes one then the next doesn't , just wondering what everyone thought , thanks Mike

Road ID and others like it are medical ID dog tags or bracelets. But, definitely worth investing in. I also had MobileAlert, which was an emergency call button thing. I had it since I was alone so much of the time. It would also be a good investment if you live alone, particularly as your liver disease progresses.

I took liver support supplements, such as milk thistle. I don’t know if they helped much since I wasn’t diagnosed until Stage 3. My gastroenterologist put me on magnesium, iron, and vitamin C, plus electrolytes. You’ll need to be a strict label reader and avoid foods high in salt, which is pretty much all processed foods, restaurant food, etc. No raw fish (so sad to say goodbye to sushi…); I don’t eat meat, but if you do or even with eggs, everything has to be thoroughly cooked.

And, stay away from people with colds, flu, etc. Since Covid was around most of when I was sick and had my transplant I was masked, and continue to be masked, everywhere.

You’ll need to be careful at work too. Horse manure has a lot of bacteria in it. I do compost consulting, so had to be cautious. It’s even more important after having a transplant as we are susceptible to bacterial and mold infections.

Here's a question if you want to tell me , what do most people eat all day , my old doc says less you eat the less your liver has to work , I was just curious I work all day on a ranch and really don't have times picked out to eat , was just thinking about that this morning thinking I could eat better , Thanks Mike

@mikej
I was advised to to eat healthy with moderate/low fat, avoid fried foods and heavy sauces, fruits and veggies, avoid excess salt, no alcohol. Basically my GI advised a heart healthy diet, and to stay physically active.

I am sharing this blog post because there is an easy to access guide to the Heart Healthy Mediterranean Diet. The Mediterranean diet focuses on delicious fruits, vegetables, whole grains, and heart-healthy protein each day. With liver disease and now with a transplant, I try to add these foods to my diet. There is a discussion where others have shared their experiences.
Blogs>Transplant>NASH Patients: Add These Foods to Your Diet
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/nash-patients-add-these-foods-to-your-diet/

-I am going to send you an invitation to this group discussion.
Transplants>Pre -Transplant Diet and Exercise Ideas
https://connect.mayoclinic.org/discussion/pre-transplant-diet-and-exercise-ideas/

Mike, You will obviously need more calories than many others. However it is What you eat that you will want to concentrate on. Do you prepare your own foods? How often do you eat out?