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It's not all about the MELD Score
There are lots of threads out there with questions and comments about MELD Scores. I just had my 1year/3 month pre-liver transplant review and my MELD is a 10. The doctors at Mayo/Phoenix emphasized that the MELD isn't everything as some people are sicker than their scores indicate. They have me on the "active" list and am in the discussion at their weekly team meetings. I have venous congestion that is of major concern because if it continues to grow it causes other operative problems. I have had esophageal varices banded - 6-8 times (no bleeding so far) - but that has precluded using a blood thinner to allow the body to dissolve the clot on its own. If my next upper endoscopy - in the next 2 weeks here in Tucson - shows no new varices we may try the blood thinner even with my low platelet counts. Though it increases the risk of bleeding, with weekly monitoring its a risk/reward decision. The bloid thinner will likely raise my INR and temporarily raise my MELD, it's worth a shot if the body breaks up the clot.
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Good morning. I just joined this online forum and have a few questions. My MELD is a 7. I have gastropathy and ? Minimal hepatic encephalopathy. I also have some muscle wasting. I am very concerned about all of this which has been uncovered in the last 6 months. I have consulted with a transplant hepatologist and he stated that I have compensated disease. Aren’t the 2 above conditions evidence of decompensation? I am concerned due to the above and ask for a prognosis. Child’s Class A was his response. Is anyone on Carvedilol or rifaximin? I am currently on no medications.
I used to say to doctors that I was sure I was not the sickest person they cared for but I was the sickest person I knew. That helped me keep things in perspective and allowed me to let the doctors do what they were trained for. Having a team that you trust is most important in this journey. The internet is a wonderful source of general info but cannot replace medical professionals who know your exact situation which is different from anyone else.
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3 ReactionsThank you Amy,
I really feel that everything is minimized. I do get tired in the morning, but eat breakfast and jog now without problems. I am considering whether I should get s as 3rd opinion at UPMC.
@hope25 glad to hear that you are able to be active - jogging was waaay outside my ability! My local GI doctor was great and advised me when was the right time to move forward for a transplant evaluation. And during the 2+ years on the list with Mayo the docs kept me informed every step of the way. That was the perfect combo for me and one I hope you can find.
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1 Reaction@amyintucson thank you for sharing your experience. I am hoping that I have the support from my transplant hepatologist as you did. The daily waiting and wondering is difficult for me. You have given me hope in the process. Thank you!
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1 ReactionWelcome Hope25. For most of us it is long journey. My MELD varies from 11-14. I work, light exercise, and function relatively well. When I get bacteria infections in my liver 3-4 events a year it usually requires a weeks stay at Mayo Clinic. So I look good, contribute to society and relatively low MELD, but I have all the faith in Mayo Transplant team. I feel confident and hopeful that my transplant will happen when it’s my turn. Keep yourself educated, trust Mayo, and have faith.
I do take Rifaxin with no side effects. My wife thinks it helps me with clarity.
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3 ReactionsThank you so very much for this boost of confidence. Can you still drive while taking Rifaxin? What were your symptoms prior to this being started? Other than infections ( ? Peritonitis) do you have any other signs of decompensation? This is very new to me and I have a suspected diagnosis but no liver biopsy to confirm.