Liver transplant - Let's support each other

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.

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.

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?

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.

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

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 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 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.

Thank you. As you may know, MS is not a place favorable to transplantation. I will go any where they want me to go if I can just get on a list. I am still young and have many more years I can offer to patient care (pathologist). I just need the chance. Even though I can hardly put one foot in front of the other, I continue to try to work. That’s what still matters to me is helping other patients as I can. KHH

@khh @gphetteplace @kltchrmn @racing212 @jeanne5009 Here is a related discussion and blog post about MELD scores. Not sure if there is anything useful that you don't already know, but thought I'd mention them:

- It's not all about the MELD Score https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
– The MELD Score: Definitions and Frequently Asked Questions https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/