Liver transplant - Let's support each other

I've been looking all over the place for a Mayo only related support group. Finally stumbled across this one this morning. I've had my liver disease for five years, first listed at UCLA then for the past 2 1/2 years listed at the Mayo Phoenix Clinic. I'm still on the waiting list in MELD purgatory. Just wanted to say Hi

It was at 22 for a long time, then has been going down and last labs in January it dropped to 9!! My back is degeneration from a separate problem and I have mast cell activation making eating a challenge. The docs are monitoring a lesion on my liver and I go back for another MRI on April 23rd with new labs.

Hi @calikellyw, I'd like to add my welcome to @gaylea1's. I'm glad you found Mayo Clinic Connect. You'll notice that I moved your message to this liver transplant support discussion. I did this so you can meet other liver transplant recipients and people waiting for a transplant like Gayle, @rosemarya @jeanne5009 @contentandwell and many others.

You may also be interested in these discussions:
- Liver disease itching https://connect.mayoclinic.org/discussion/liver-disease-itching/
- Post Liver transplant story https://connect.mayoclinic.org/discussion/post-liver-transplant-story/
- It's not all about the MELD Score https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/

We look forward to getting to know you. What questions might you have? How are you feeling these days?

Thanks for moving me. I don't have any questions right now. I'm tired and in pain but that is the norm these days. I am curious if anyone else went through the bariatric sleeve procedure with their transplant and what they think of it. I'm being asked to do this and I've been to the seminar but I'm curious about life a year or so afterwards with a new liver and bariatric. Do it again? Wish you would have done it? Wish you wouldn't have? You get used to it? I have the bariatric evaluation day coming up next month to answer my medical questions but was wondering on a personal level.

Hi, @calikellyw. I am happy to meet you and I offer you my support as you move forward to whatever lies ahead. I received my liver and kidney at Mayp in Rochester in 2009. My liver failure and subsequent kidney failure were caused by a rare disease, PSC (Primary Sclerosing Cholangitis). Although you and I have different diagnoses, I know that the fears, the uncertainty, and symptoms are very much alike.
I am here anytime you have any questions and I am here if you simply want to talk. I look forward to hearing from you.

Hi @calikellyw and welcome to Connect from me too. 🙂 I can't imagine being listed for so long, waiting! You must bed doing well though if your MELD is at 9 now, that's great.
I was waiting for not quite a year and a half at Mass General Hospital in Boston. I do know that in CA the waits are generally longer and they tend to transplant at higher MELDs. Massachusetts was that way too but I somehow got fortunate and got my transplant at MELD 28. It was a good thing I did because during the six weeks prior to transplant I was going downhill.

I did not have a bariatric sleeve but I did lose quite a bit of weight prior to transplant -- working at it, not because I was ill and not eating. I wanted to lose weight because I felt it would help in my recovery. I read recently that they are feeling the bariatric surgery is a better option because then the patient is less apt to gain weight afterward. I must admit I have gained 10 pounds back and am struggling to lose them now.

Please feel free to ask any questions you would like answered. We each tend to have our own unique experiences with waiting and post-transplant.
JK

Thank You very much. My concern is that I feel great right now, however my Liver and Kidney numbers are in decline. The main concern is what can I expect if I don't try for a transplant and just do Dialysis. I was told by one Dr. (not associated with the MAYO that I had 2 Years (diagnosis a year ago). So my mind tells me my chances would be far better with a transplant, however I do have questions, and it's wonderful to hear from people like you of the success you have. Thank You - Ben Lambert in Las Vegas

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.

@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

What is a MELD score and how is it calculated?