Liver transplant - Let's support each other

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

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

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.

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'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?

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.

@calikellyw hello and welcome. I am a new transplant recipient (Nov 28 2018).
I felt I was stuck in the MELD purgatory at one point myself. My MELD was 30 for a long time. I did get my liver at 17 months on the wait list. If you don't mind me asking what is your current MELD score?
You will find this group informative and very supportive. Sharing their experiences helped me through many difficult times. I wish you a speedy journey.

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

I pray that tomorrow is better.

Not good going sleep