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Just thought I'd post a quick update on how things are going over here,

since they have changed a bit. My MELD score has been increasing for

the last year or so, and over the last three months it's jumped to 20,

which is enough to put me 5th on the transplant list at Vandy. I've

also turned a brilliant yellow (someone at our church's St. 's

day party thought I had put on green face paint for the occasion!)

Other than that I'm actually doing pretty well. I'm pretty itchy, which

makes it hard to get to sleep, but I've been managing by taking hot and

cold showers before bed.

I have to get my blood work done again to restage my MELD score by the

16th of next month, and I'm keeping a close eye on the UNOS website to

get an idea if I go up or down on the list. With the suspicion of

cancer recently (which they seem to think wasn't cancer after all since

my more recent CT scan) I'm ready to go ahead and get the transplant if

possible, but since there's really nothing I can do to make it come

faster I'm just waiting and praying and leaving it in God's hands.

athan

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athon,

I'm sorry to hear about your yellow colour and itchiness. I am very new to

this list, and have a few questions. How is the MELD score determined? There

is obviously a formula, is there a website that explains each part? Can you

personally work out your MELD score?

I have had the unfortunate diagnosis of Hepatic Pulmonary Syndrome, a

pulmonary problem caused by PSC, which has very short life expectancy

without transplant. Does anybody have any experience with this (I've read

what I could medically, but I mean personally). This has all come as a giant

shock, as I have had PSC for about 10 years, and until now has not affected

me at all.

Thanks in advance,

Penny (in Australia)

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Dear athan,I will be thinking of you and praying that you get transplanted soon.Are you multi-listed? LeeJust thought I'd post a quick update on how things are going over here, since they have changed a bit. My MELD score has been increasing for the last year or so, and over the last three months it's jumped to 20, which is enough to put me 5th on the transplant list at Vandy.

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Penny wrote:

> How is the MELD score determined? There

> is obviously a formula, is there a website that explains each part? Can you

> personally work out your MELD score?

>

It's possible to calculate your MELD score if you have the numbers from

you lab work. Specifically what you need is your bilirubin, INR, and

creatinine. I've got an excel spreadsheet that I use to calculate mine,

and there are several websites that will calculate it for you too.

There's one at:

http://www.unos.org/resources/MeldPeldCalculator.asp?index=98

I've heard of hepatic pulmonary syndrome, but I don't really know

anything about it. Hopefully someone else here will...

athan

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