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MELD score goes up and down, does anyone else have this?

Posted by azkellyw @azkellyw, Mar 26 11:28am

I've been on and off the waiting list for twelve years now with no transplant as of today. My MELD score doesn't stay stable long enough to remain on the waiting list for the last two years. It jumps between 20 to 8. Yesterday's labs show it's back to 8. I need several other surgeries once the transplant is healed but I just can't get there. My heptologist at Mayo called it MELD purgatory as I have all the crummy parts of needing a transplant without having one. I'd be glad it was low if I didn't need so many other issues fixed; degrading discs in my lumbar needs fusing, collapsed nasal passages needs balloon surgery, pinched nerve in my neck on going nerve studies to determine best way to correct, carpel tunnel release both wrists (second time) and shoulder correction. I'd like to get these fixed since my quality of life is in decline but I'm stuck with the low MELD. It's too low for any exception points to make a difference. Does anyone else have an irratic (or have had) MELD scores? I'm getting discourged and feel like ditching the whole thing.

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azkellyw | @azkellyw | 15 hours ago
In reply to @pgruetz "23 different ways to lose a liver and everyone chooses that is cause because it sounds..." + (show)
@pgruetz

23 different ways to lose a liver and everyone chooses that is cause because it sounds the worst mine was a combination of a lot of different things and I wasn’t a heavy drinker either didn’t even drink beer , one of my nurses fingernail gals died because the acetone killed it she didn’t drink at all

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Exactly! It was the perfect storm of many things that created it and all anyone can come up with is drinking, so frustrating. Like lung cancer is just from smoking, kidney disease is just from drugs, heart disease is just from eating fatty foods and smoking. It gets so old!!! I'm glad at least you understand.

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1 reply
pgruetz | @pgruetz | 14 hours ago
In reply to @azkellyw "Exactly! It was the perfect storm of many things that created it and all anyone can..." + (show)
@azkellyw

Exactly! It was the perfect storm of many things that created it and all anyone can come up with is drinking, so frustrating. Like lung cancer is just from smoking, kidney disease is just from drugs, heart disease is just from eating fatty foods and smoking. It gets so old!!! I'm glad at least you understand.

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I believe some hospitals get funding or it’s easier to write alcoholism killed the liver instead of finding the real reason even though some hospitals won’t give you a transplant if you are an alcoholic kinda ironic, I was poisoned but it was on only one record and not investigated

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azkellyw | @azkellyw | 10 hours ago
In reply to @pgruetz "You can’t go to a dentist afterwards for at least 6 months afterwards get all you..." + (show)
@pgruetz

You can’t go to a dentist afterwards for at least 6 months afterwards get all you need done before the surgery

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Can't get anything fixed due to platelets in the 20's. If I could get one of the list of things fixed it would be my sinuses but the capilaries are too close to the surface inside the nose and ears. I'll deal with dental later, it's not bugging me yet.

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