It's not all about the MELD Score

@contentandwell Yep, MELD one week prior to transplant was 14. And I was only on the transplant list for 1 month. I'm in Phoenix. My blood type is A+ and I'm 6'1", neither of which are horribly unique. I guess I'm just extremely fortunate.

One interesting thing is that I have never had a liver biopsy. In hindsight, I've wondered if my body was healing enough to not need the transplant, but based on the fact that I had 8.5 liters of ascites fluid the day before transplant (1 week's worth) and the surgeon's note that my liver was "shrunken and cirrhotic", transplant was the right thing to do.

I was told they take your highest Meld score and go off that. They were draining between 9 and 12 liters every week for 3 months from me. I would gain 25 lbs and then lose it once drained. My Meld score got as high as 28 or 29. When I received my liver in Phoenix, i was on list 30 days. I am also blood type B which they said helped as that put me at top of list for that blood type. When i had my transplant, my meld was in low 20's but the draining was taking toll on kidneys and rest of body.

@bikermike I am happy for you that you have had a transplant and it sounds as you are doing well now. It’s so nice to be on the other side of transplant.
JK

My liver doctor emailed me. My electrolytes and kidney function look good, lab mostly unchanged. I still have itchiness at night, up every hour using the bathroom, and feel fatigued during the day. I haven’t had any Ascites or weight gain for 2 months. I will speak to her tomorrow. My thoughts are since my condition is stable, with my last Meld score being a 12, that my case will not be presented to the transplant team (Univ Pa-Philly) and it will just be just wait and see. I wish there was more of a definitive course of direction.

@johnshaw I am sure you must be feeling very frustrated. It's good that you haven't had ascites or weight gain, I never had ascites until very shortly before my transplant, although I did get edema at times. Both were very bad near the end. I had lost weight previously and it was a good thing I hadn't thrown out my old clothes because they were the only things that fit me, and I could only put slippers on my feet.

I guess you have to be happy that things are stable and that your condition is such that your MELD is low. I have heard that some people can go for very lengthy amounts of time without having a transplant, so perhaps you will be one of those. If you are feeling well, have few symptoms (no HE?) then it sounds like you can live a pretty normal life. I would assume they must consider your cirrhosis to be compensated.
JK

Saw doc today. Doing so well that won’t be presented for transplant. A wait and see situation. Labs and sonogram at the end of the month

Thank is good news. I have been hanging in for three years...Im still too early but they watch me like a hawk..all good

@johnshaw - My liver disease was originally diagnosed at UPenn, the hepatologist was Karen Krok (now at Penn State Health.) I lived in Central NJ at the time and was very pleased with the treatment. I moved to Tucson in 2011.

Fatigue during the day, itchiness at night along with bathroom trips every hour. I’m glad I’m not sicker but doc has made it clear my liver is quite diseased. Of course she won’t predict the future so I will live with that uncertainty. For the time being I run 5 miles a day, eat only vegetarian and attend AA meetings. I do enjoy the fellowship of the patients on this group and the people at AA. I truly believe that fellowship helps us stay grounded and provides an avenue for support.

Hi, @johnshaw. I am a transplant recipient. I received both liver and kidney simultaneously from the same deceased donor. That was in 2009. I was diagnosed with liver disease almost 8 years before I became a transplant candidate. If my memory serves correctly, my score was mostly steadily rising. In all honesty, I never paid any attention to that number because how I felt told me what I needed to know. I was more concerned with trying to maintain some level of physical activity and to combat the excessive nausea as well as itching and ascites. I can understand how you feel as you are living with the unknowing. I want to congratulate you for your strength to overcome your alcohol dependence and to develop a new healthy lifestyle. That will be a major benefit as you move forward with whatever path your liver takes.
I hope that you looked at the information that was posted earlier that says "Since your health condition can change frequently, your doctor will send you to the lab for updated blood work routinely, so they can assess your condition often"....The MELD Score: Definitions and Frequently Asked Questions https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
I am sorry that you feel so poorly, but it sounds like your doctor is keeping a close watch on your liver. Will you keep us updated?
I have always been told that all liver disease has some similarities, yet no two of us are alike in what we experience. The best we can hope for is to be patient and to do everything to promote out best healthy living during the difficult journey so that we are helping our bodies prepare for eventual surgery.
I am happy that you have joined our fellowship! I invite you to brouse thru all of the discussions and to know that you are welcome to join in anywhere.
What has your doctor said she wants to learn from the sonogram at end of May?