It's not all about the MELD Score

Posted by amyintucson @amyintucson, May 19, 2018

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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@amyintucson Hi there. I've been on the wait list for 15 months now and my MELD score is 30. I am relatively healthy but have a lot of end stage afflictions. I have good and bad days. Waiting is rough but I know my day will come. Hang in there.

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@kltchrmn

My newest twist: I have developed an inguinal hernia that can’t be fixed until after the transplant. With a MELD of 11 it’s a long time of being careful and watching what I do ☹️

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@kitchrmn I am so sorry you have to wait so long before you can get the hernia fixed. I was in that position needing a knee replacement. I was scheduled to have it before I had the cirrhosis diagnosis but on the day of surgery my platelets were too low so the doctor, understandably, would not do it. I had to wait until after my liver transplant. They would have let me have it done 6 months after surgery but I was just not ready for another surgery and hospital stay so I ended up waiting until a year after my transplant.
Fortunately for me, exercise helped my knee to feel better so I was less miserable. I presume there is nothing they can do to provide help for a hernia. I hope it won't be too bothersome while you wait for when it can be done.
JK

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@contentandwell Thanks. I’m doing what I can and not doing what I shouldn’t!

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@gaylea1

@amyintucson Hi there. I've been on the wait list for 15 months now and my MELD score is 30. I am relatively healthy but have a lot of end stage afflictions. I have good and bad days. Waiting is rough but I know my day will come. Hang in there.

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It will gaylea1...I watching your days before CAREFULLY. We can all learn from your patience....

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@kltchrmn

My newest twist: I have developed an inguinal hernia that can’t be fixed until after the transplant. With a MELD of 11 it’s a long time of being careful and watching what I do ☹️

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@kltchrmn
I am sorry to here of the addition of your health . the hard part is always the wait. I have a meld of 33 and I am listed. I am blessed to just have the chance at the transplant with no guarantees . Stay strong and positive embrace the blessing that come into your life. God Bless

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I too have developed a hernia. Doctors joked that they'd give me a good tucking when I had the transplant!

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@amyintucson I don’t need tucking at the hernia site. I wouldn’t mind if they’d get rid of the extra skin due to weight loss!

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@kltchrmn

@amyintucson I don’t need tucking at the hernia site. I wouldn’t mind if they’d get rid of the extra skin due to weight loss!

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I suggested the same thing - arms, neck, tummy tuck!

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@amyintucson

I suggested the same thing - arms, neck, tummy tuck!

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@amyintucson @kitchrmn. All of those and eyelids too. Some days my eye lids are so droopy that they would be covered by insurance but other days they are not quite that bad. My Opthamologist suggested that I see a doctor that they recommend for that. If it interferes with your vision, it’s covered.
JK

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@amyintucson

I suggested the same thing - arms, neck, tummy tuck!

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@amyintucson aren't surgeries like that expensive? Just wondering as I have no idea.

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