Liver transplant - Let's support each other

Thank everyone for all the insight. It will allow me to ask better questions of my team of doctors in Las Vegas and at the MAYO in Phoenix. I have to travel since there are no options to have a liver transplant anywhere in Nevada.

@mego2k,
Welcome to Connect. I am thrilled for you to have received your transplant and that you are doing so well!
Thank you for sharing your success and message of hope. During my own transplant journey, I looked for messages and signs of encouragement along the way, and a message such as you have just posted.

I invite you to scroll thru our many transplant discussions, and join in anywhere. While your transplant experience is still new in your mind, here is one that I want to share with you. - Liver transplant recipient: Care memories to share
https://connect.mayoclinic.org/discussion/liver-transplant-recipient/
@mego2k, What was the most surprising experience for you about getting your transplant?

mego2k, thank you for the info. I feel overall fine and stay active. I'm looking forwards to starting my evaluation journey at the MAYO in Phoenix next week, as my creatine level was 3.5 today. Unless told otherwise I will have Fistula Surgery in a couple of weeks and begin dialysis. I've been to numerous Las Vegas Doctors and Hospitals until finally it became obvious to me that I needed to be at a more comprehensive facility. I'm good at following Doctors orders with the Caveat that they Explain and not pontificate.

I am a recent liver transplant patient ( March 10,2019 . You could experience a lot of things that you might think are not related to liver disease but are, like severe itching , rashes , weight loss just to name a few. My best advice to tell you is do what the doc tells you. Buy into the process it will be hard somedays, but stay the course, stay active as I worked for 4 hours on the day they wanted me to go to the hospital. Most of all stay positive that you will be blessed with a transplant . Even if you don’t get one at least your loved ones have good memories. I wish everyone could get the gift of life as I did. Good luck with the journey. Also if you can research life after transplant some as that ride is awesome and scary all in one.

@benlam11, Here is a link to the Mayo Connect Transplant Pages that I want to share with you since you said that you are at the beginning of a possible transplant journey. I think that you will find a variety of transplant related information that is presented by the transplant staff. https://connect.mayoclinic.org/page/transplant/

Here is -The MELD Score: Definitions and Frequently Asked Questions
https://connect.mayoclinic.org/page/transplant/newsfeed/the-meld-score-definitions-and-frequently-asked-questions/

It's different for each person, but as a general rule, limit sugar and junk carbs. After that there are many factors involved, that have to be sorted out, blood work and hormone levels etc.

@benlam11 The MELD score is for liver -- it stands for "MELD Score (Model For End-Stage Liver Disease) (12 and older)". There is also a PELD for pediatric livers.

Here is a calculator for it: https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

The MELD at which transplants occur varies a lot from one region to another - there are 11 regions I believe. I think Arizona is pretty good. I was in Boston which at that time generally did not transplant livers until the MELD was in the 30s but I was fortunate to get my transplant at MELD 28. I believe that my blood type helped with that. It's B. I think B, A and AB generally get transplanted sooner than type 0 because when a liver becomes available they look at who is next on the list with a matching blood type. If the liver is from a type O donor, that liver can go to anyone, whereas an O recipient can only get an O liver. At least that's my understanding of it.
JK

What is a MELD score and how is it calculated?

@benlam11 I too wanted to lose weight before my liver transplant. I actually already was, and I used myfitnesspal.com to help me. You have to be honest with it, if you are not you are only cheating yourself. You put in everything you eat and drink each day. Sometimes it's surprising when you see the nutrients in various foods. You can tell it your current weight and your goal and when you are done recording everything for the day it tells you "if you do every day like this you will weight XXX in five weeks. So it is encouraging. If you don't eat enough it won't give you the end of day numbers!
I lost a total of about 90 pounds overall, some before any of this, and I have in the last year gained back 10 so I am back to using myfitnesspal to try to drop those 10 pounds.
I did also use a fitness tracker to keep motivated with exercise, and I have a great scale, it tells you how much of your weight is fluid! I realize it is not medically accurate, but it is a good gauge. If my weight goes up but I see I am retaining fluid, I don't feel as bad and I know I have to be even more diligent about not ingesting sodium.
Good luck with the weight loss, and also with your future plans. I understand the wait for a kidney transplant is even longer than it was for a liver transplant. I don't think that getting a transplant depends on when you got listed, it depends on your condition.
JK

Weight has been a lifelong problem, especially since I was a Desk Jockey for 30 years. I'm at 250 lbs despite exercise, so I am interested in doing whatever. Lately I've been told less than 2 gems of sodium per day, only low potassium foods and a low carb diet. It's getting absurd and I would like for one of these nutritionists to come up with a month long diet tailored for me, instead of here in Las Vegas just having them basically read their book to me.