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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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They found the carcinomas (small like simultaneous to cirrhosis and HEP C so April of 2020 and the Y90 treatment occurred on July 21. Successful HEP C treatment ended in November. I have talked to hepatologist and they feel that right now I'm better off with the liver I have than a transplant. MELD of 8 disqualifies me except that the carcinomas can add points under a Milan criteria (which I don't really understand) if they are not dead at next CT in January. Of course I'm praying for them to be gone. I really don't want a transplant and am in hopes things will improve or just stay where they are now that HEP C is no longer chewing on my liver. I'm 68 and understand you age out at 70 so will have to think about this soon. Does it get better, get worse, or stay the same at this juncture?
@digibson, This is not an easy journey and the unknowing only make it more complicated. As the title of this discussion says: It's not all about the MELD score. I am ready to be right beside you as you wait out the month of January. I hope that you will get the news that you are hoping for after the CT scan. Keep in touch and let me know what is happening. Do you know when you will have the scan?
My 52 year old daughter has a meld score of 30. Has cirrhosis.. waiting for appointment at Henry Ford to schedule a transplant. Can u give me prognosis. So scared
@shogg, Welcome to Mayo Clinic Connect. I am happy to meet you this morning and reach out across the virtual miles as you and your daughter begin a new life journey toward a possible liver transplant. On Connect, we are patients and we can offer our companionship and share our own experiences as a means of support for both of you. We are not medical professionals, and so we cannot make a diagnosis or prognosis.
I had a liver and a kidney transplant in 2009 at the age of 60. I was near the age of 50 when my own PCP sent me to a gastroenterologist (GI) for a consult after he became concerned about y routine annual labs. So I was around your daughter's age when my own journey began. I can still remember the fear and the uncertainty of it all. One of the first things I learned was that with liver disease, there are many causes and everyone and every person reacts differently - there is never going to be a one-size-fits-all. However, as you move thru this process with her, you will gain information from her transplant team.
Your daughter has cirrhosis. and so her MELD score will qualify her to be placed on a transplant list after she goes through an thorough medical evaluation by the transplant team. This evaluation will provide the team with information and to treat any potential conditions that could interfere with surgery.
Does your daughter have a diagnosis for her liver condition? How does she feel? What questions would you like to ask while she is waiting for an appointment to be scheduled?
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3 ReactionsThank you for the response. She has swelling in legs. Was in arm but has moved to leg. Also has a blood clot in her leg. She broke her ankle a month ago and that is where the clot is. In March she was told there was a problem with her liver and was told to stop all alcohol consumption which she did. Spent last week in hospital with swelling and was given this news. Waiting to hear from Henry Ford now.
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1 ReactionHello @shogg, I’m very sorry about your daughter’s condition. She’s very fortunate to have your support. I had my liver transplant in August 2020. When I was in Stage 3 liver cirrhosis and my meld score was in the high 20s (and I have an autoimmune disease which was causing other issues), but Covid was interfering with my ability to be evaluated for a transplant. My stomach swelled immensely, as did my lower legs and feet, I was getting increasingly fatigued and ill.
Fortunately, I finished my evaluations, was placed on the list and was returning home after an overnight stay at my transplant hospital, when I got the call for my transplant surgery.
Please let us know how her visit at Henry Ford goes. The evaluation is an important and encouraging step along the way. The transplant team is there to ensure success. Don’t be afraid to ask questions and talk about yours and your daughters concerns. It’ll be a stressful journey, but it’s important that both you and your daughter stay positive and be strong.
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4 ReactionsIt is a frightening diagnosis and I'm sure you're scared but have lots of hope too. I was diagnosed with cirrhosis in April of 2020 and was scared as well but the more I learned the less fear I felt. I swear some of these hepatologists have a pocket full of miracles. Best to focus on how good her treatment can be instead of simply focusing on what ifs. Glad to hear she's going to a good hospital. Any word on scheduling the appointment? Have you in my prayers. Diane
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5 ReactionsTracey is 47. I aged her. Thank you for your reply. I sent it to her as it
was so positive. She has a consultation next week..go from there..again
thank you
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1 Reaction@shogg, It's good to hear that she has an appointment for a consultation next week. It helps to have an extra set of ears because there is so much information. Will you or someone be going to the appointment with her next week?
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1 ReactionYes her husband