Liver transplant - Let's support each other

I empathize with both of you. I was down to weekly paracenteses and monthly esophageal varices bandings, but my kidneys improved so my MELD score dropped to 12. I did not expected to get a transplant, yet here I am, 9 months post. First and foremost I had people all over the country praying for me. There were also several things in my favor. I live 10 minutes from the Phoenix Mayo, and the average MELD score is significantly lower here. Proximity is also a definite plus since the shelf life is so short. Consider multiple listings if your local hospital averages a higher MELD. Also I agreed to accept a liver from a donor with hepatitis C. It really is curable now, vs my liver disease, which was terminal. My donor didn’t have hep C, but did have meningitis. I was on extra IV antibiotics, but other than that it was fine. I wonder if they didn’t call the people above me on the list because they figured if they wouldn’t accept a hep C donor they wouldn’t accept this one. (I didn’t ask - I just counted my blessings). If your muscle mass is low your GFR will be artificially high. Do whatever you can to increase it and/or ask them to estimate it by cystatin. I wish you the best. I know how hard this is.

I’m in a similar boat. My MELD just fell from 23 to 11. That seems to be my magic number. No matter how high it gets it eventually goes back to 11. I’ve been listed for almost 4 years and feel like crap. No energy, unable to concentrate or focus on new info. Living life in bed watching reruns. Boring life.

Kim

I have been in stage 4 for over 4 years but my MELD stays between 11 and 14. However I have been in decompensation since I was first diagnosed and I feel like I am a walking time bomb. However theonly the ony thing that seems to matter is the MELD score. For starters, my portal and pulmonary hypertension are off the charts, liver density unheard of, no flow in hepatic vein and a portion of my inferior vena cava flows backwards. Thats just the beginning, and still my MELD score remains "normal". What are people like me supposed to do?
Karen

I'm also in stage 4 liver disease for 2 years now and my meld is 12.

Stage 4 Cirrhosis for 4 years with a meld 6 -8. I have liver disease but it is stable. May never need transplant but could jump up quick....so I wait until I get to be like you. Hoping you are well now.

Hi @kimestes, welcome to the Transplants group. I'd like to connect you with other liver transplant patients like @stella25 @gaylea1 @cmael @contentandwell @jeanne5009 @jerrynord to mention a few.

Have you been able to able to gain some weight back?

A meld score of Six is hardly liver disease. I'm not a doctor but it sounds like Billiary disease. I lived with a Meld of 30 for a year with two Parasentesis before My Meld went to 40 five days before my liver transplant.

I just finished my transplant workup. Was in very bad shape this summer. Weighed 79 pounds and went into the hospital. Was having paracentesis every 10 days. Finally got a drain put in to drain at home. Then the acites just stopped all of a sudden. I chalk it up to lots of prayer. Nothing else had changed, except I was dehydrated and the Dr lowered my dose of fluid medicine. Went to Mayo in Jacksonville and found out MELD score is 6. Probably to early for transplant. Will find out next week.

@paulapartyof1, Welcome to Mayo Connect. Your sister is fortunate to have you to support her and to consider being a living donor for her. I transplanted at Mayo Rochester in 2009 with an anonymous deceased donor, so I have no firsthand experience about the living donation. I do know that at Mayo everyone is treated individually and that there are many variables to be considered. Only the transplant team can make those decisions, and answer your specific donor related questions. I see that you have already completed the first step - the forms and communication.
Here is some information from Mayo about their living organ donor program.

- Living Donor Toolkit -
https://connect.mayoclinic.org/page/transplant/tab/resource-36/
- Living-donor transplantation - Mayo Clinic Transplant Department
- Be sure to view the informative 1:50 min video: Living Liver Organ Donation
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818
- Nondirected Living donor transplant
https://www.mayoclinic.org/tests-procedures/nondirected-living-donor/pyc-20384850
Paula, What are some specific questions that you would like to ask of our living liver donor members?

Ty so much for reply,