Re: Conflicting MELD score calculations

[Guest guest]

Hi, Margaret. So, is this your transplant evaluation? it sure sounds like it. On

the prognosis after ascites, I have a comment on that. I asked one of my doctors

, gastronenterologist from south Africa, and I believe him. It goes like this--

after the onset of ascites the median survival is thought to be less than 50%-

two years.

That means that approximately 50% percent of people with this condition will

die before two years, and the other 50 percent will not. The numbers change

after that. I don't know what they are by memory, but they are very variable. I

found them in a pdf.I am uploading the paper in which I took to my gastro, and

he commented the above opinion. . You can find it in the " files section " . It's a

PDF called Clinical out comes in cirrhosis. Thanks, Love, Bobby

Conflicting MELD score calculations

Hi, I just got through with all my blood labs, endoscopy, CAT scan,

echocardiogram and 6 minute walk at the pulmonologist. What a relief

to put this behind me - temporary as it will be. I had a visit with

my gastroenterologist today and she told me my MELD score was 16. I

was shocked as I had used the UNOS calculator and calculated a score

of 12. She uses the Mayo Clinic calculator that takes into account

sodium. She went to the Mayo site and did the calculations with and

without sodium (they have both calculators on the site) and got 12

without the sodium and 16 with the sodium. She said she didn't know

why they were not the same as she thought they should both give the

same MELD score. Does anyone have any information about this?

All my tests came out OK, but my liver is definitely going out on

me. I'll do what I can to slow the decline down. My gastro thought

it was fine that I am going to South America for a month tomorrow.

Truthfully, if it weren't for the ascites and edema, I wouldn't know

there was anything wrong with me. I did ask her about the 50% death

rate two years after the diagnosis of ascites and she said she had

never heard that. She said it is highly variable and unpredictable.

Hmmmmmm?

This is my second post, but I read all of them and feel so lucky to

have found this group. It really helps so much not to feel alone.

Margaret

[Guest guest]

Hi Bob, Thanks for the information. I had my transplant evaluation in 2003.

These were all follow-up tests that I get every 6 months. My transplant

doctor is from South Africa too and I wonder if we both see Bass at

UCSF. Thanks so much. Aloha, Margaret

On Wed, Jul 9, 2008 at 6:39 AM, Bob Aragon

wrote:

> Hi, Margaret. So, is this your transplant evaluation? it sure sounds

> like it. On the prognosis after ascites, I have a comment on that. I asked

> one of my doctors , gastronenterologist from south Africa, and I believe

> him. It goes like this--

> after the onset of ascites the median survival is thought to be less than

> 50%- two years.

> That means that approximately 50% percent of people with this condition

> will die before two years, and the other 50 percent will not. The numbers

> change after that. I don't know what they are by memory, but they are very

> variable. I found them in a pdf.I am uploading the paper in which I took to

> my gastro, and he commented the above opinion. . You can find it in the

> " files section " . It's a PDF called Clinical out comes in cirrhosis. Thanks,

> Love, Bobby

>

> Conflicting MELD score calculations

>

> Hi, I just got through with all my blood labs, endoscopy, CAT scan,

> echocardiogram and 6 minute walk at the pulmonologist. What a relief

> to put this behind me - temporary as it will be. I had a visit with

> my gastroenterologist today and she told me my MELD score was 16. I

> was shocked as I had used the UNOS calculator and calculated a score

> of 12. She uses the Mayo Clinic calculator that takes into account

> sodium. She went to the Mayo site and did the calculations with and

> without sodium (they have both calculators on the site) and got 12

> without the sodium and 16 with the sodium. She said she didn't know

> why they were not the same as she thought they should both give the

> same MELD score. Does anyone have any information about this?

>

> All my tests came out OK, but my liver is definitely going out on

> me. I'll do what I can to slow the decline down. My gastro thought

> it was fine that I am going to South America for a month tomorrow.

> Truthfully, if it weren't for the ascites and edema, I wouldn't know

> there was anything wrong with me. I did ask her about the 50% death

> rate two years after the diagnosis of ascites and she said she had

> never heard that. She said it is highly variable and unpredictable.

> Hmmmmmm?

>

> This is my second post, but I read all of them and feel so lucky to

> have found this group. It really helps so much not to feel alone.

> Margaret

>

>

[Guest guest]

I wouldn't surprise if these MELD score numbers could literally vary from day to

day. Evidently these MELD score numbers are the best tool a transplant team has

with todays technology. I have had numerous blood tests and my MELD score has at

times varied from test to test. That being said, when I quit drinking my scores

generally improved over time. For instance'; When I was drinking my billirubin

was always in the mid to high teens. After I had been sober  for a few months I

got my billirubin down to 1.7...a few months later, still sober, it went to 4.3

?????...stlill nowhere near the teens they once where. Generally they improved

but would spike for no reason at all.

 

As a matter of fact I had a low billirubin when they found the tumors. My

alpha-ferra-protein was off the charts? I just started swelling and swelling. I

would swell up like a puffer fish and get enough lasix in me to break the

dam.....I would deflate....2-3 days later I would be swelled up at least as bad

or worse. I felt like that girl on Willie Wonkas Chocolate Factory

that blew up like a blueberry and had to be rolled down to the de-juicer.

> Hi, Margaret. So, is this your transplant evaluation? it sure sounds

> like it. On the prognosis after ascites, I have a comment on that. I asked

> one of my doctors , gastronenterologist from south Africa, and I believe

> him. It goes like this--

> after the onset of ascites the median survival is thought to be less than

> 50%- two years.

> That means that approximately 50% percent of people with this condition

> will die before two years, and the other 50 percent will not. The numbers

> change after that. I don't know what they are by memory, but they are

very

> variable. I found them in a pdf.I am uploading the paper in which I took

to

> my gastro, and he commented the above opinion. . You can find it in the

> " files section " . It's a PDF called Clinical out comes in

cirrhosis. Thanks,

> Love, Bobby

>

> Conflicting MELD score calculations

>

> Hi, I just got through with all my blood labs, endoscopy, CAT scan,

> echocardiogram and 6 minute walk at the pulmonologist. What a relief

> to put this behind me - temporary as it will be. I had a visit with

> my gastroenterologist today and she told me my MELD score was 16. I

> was shocked as I had used the UNOS calculator and calculated a score

> of 12. She uses the Mayo Clinic calculator that takes into account

> sodium. She went to the Mayo site and did the calculations with and

> without sodium (they have both calculators on the site) and got 12

> without the sodium and 16 with the sodium. She said she didn't know

> why they were not the same as she thought they should both give the

> same MELD score. Does anyone have any information about this?

>

> All my tests came out OK, but my liver is definitely going out on

> me. I'll do what I can to slow the decline down. My gastro thought

> it was fine that I am going to South America for a month tomorrow.

> Truthfully, if it weren't for the ascites and edema, I wouldn't

know

> there was anything wrong with me. I did ask her about the 50% death

> rate two years after the diagnosis of ascites and she said she had

> never heard that. She said it is highly variable and unpredictable.

> Hmmmmmm?

>

> This is my second post, but I read all of them and feel so lucky to

> have found this group. It really helps so much not to feel alone.

> Margaret

>

>

[Guest guest]

I read somewhere that the test for bilirubin in the urine was a much more of a

sign of how damaged the liver was than bilirubin in the blood.

MaC

Chief Little Eagle wrote:

I wouldn't surprise if these MELD score numbers could literally vary from day to

day. Evidently these MELD score numbers are the best tool a transplant team has

with todays technology. I have had numerous blood tests and my MELD score has at

times varied from test to test. That being said, when I quit drinking my scores

generally improved over time. For instance'; When I was drinking my billirubin

was always in the mid to high teens. After I had been sober for a few months I

got my billirubin down to 1.7...a few months later, still sober, it went to 4.3

?????...stlill nowhere near the teens they once where. Generally they improved

but would spike for no reason at all.

As a matter of fact I had a low billirubin when they found the tumors. My

alpha-ferra-protein was off the charts? I just started swelling and swelling. I

would swell up like a puffer fish and get enough lasix in me to break the

dam.....I would deflate....2-3 days later I would be swelled up at least as bad

or worse. I felt like that girl on Willie Wonkas Chocolate Factory

that blew up like a blueberry and had to be rolled down to the de-juicer.

[Guest guest]

It wouldn't surprise me, MaC. I wonder if a billirubin count could vary in the

urine and in the blood  with the same battery of tests? Most of my tests don't

ask for a urine drop. I have the worst bashful bladder in the world so more

times than not they get my sample via a catheter. They get tired of

waiting...:-)

I wouldn't surprise if these MELD score numbers could literally

vary from day to day. Evidently these MELD score numbers are the best tool a

transplant team has with todays technology. I have had numerous blood tests and

my MELD score has at times varied from test to test. That being said, when I

quit drinking my scores generally improved over time. For instance'; When I

was drinking my billirubin was always in the mid to high teens. After I had been

sober for a few months I got my billirubin down to 1.7...a few months later,

still sober, it went to 4.3 ?????...stlill nowhere near the teens they once

where. Generally they improved but would spike for no reason at all.

As a matter of fact I had a low billirubin when they found the tumors. My

alpha-ferra-protein was off the charts? I just started swelling and swelling. I

would swell up like a puffer fish and get enough lasix in me to break the

dam.....I would deflate....2-3 days later I would be swelled up at least as bad

or worse. I felt like that girl on Willie Wonkas Chocolate Factory

that blew up like a blueberry and had to be rolled down to the de-juicer.

[Guest guest]

Ascites is terrible. So far I hate it more than any of the other symptoms.

The conflicting MELD scores were not on different blood draws. They were

calculated on different calculators for <meld on the <<<Mayo Clinic website

and should have been the same. I am in Uruguay now, but plan on calling

them and getting an aswer when I return at the first of August. I´m

surprised no one else has run into this, but I will post what I find out. I

have never been a drinker or taken drugs and don´t have any of the know

viruses that cause hepatits, so who knows...Hope you are having an easy day

and thanks for sharing your information with me. Margaret

>

> I wouldn't surprise if these MELD score numbers could literally vary

> from day to day. Evidently these MELD score numbers are the best tool a

> transplant team has with todays technology. I have had numerous blood tests

> and my MELD score has at times varied from test to test. That being said,

> when I quit drinking my scores generally improved over time. For instance';

> When I was drinking my billirubin was always in the mid to high teens. After

> I had been sober for a few months I got my billirubin down to 1.7...a few

> months later, still sober, it went to 4.3 ?????...stlill nowhere near the

> teens they once where. Generally they improved but would spike for no reason

> at all.

>

> As a matter of fact I had a low billirubin when they found the tumors. My

> alpha-ferra-protein was off the charts? I just started swelling and

> swelling. I would swell up like a puffer fish and get enough lasix in me to

> break the dam.....I would deflate....2-3 days later I would be swelled up at

> least as bad or worse. I felt like that girl on Willie Wonkas Chocolate

> Factory

> that blew up like a blueberry and had to be rolled down to the de-juicer.

>

>

>

> > Hi, Margaret. So, is this your transplant evaluation? it sure sounds

> > like it. On the prognosis after ascites, I have a comment on that. I

> asked

> > one of my doctors , gastronenterologist from south Africa, and I believe

> > him. It goes like this--

> > after the onset of ascites the median survival is thought to be less than

> > 50%- two years.

> > That means that approximately 50% percent of people with this condition

> > will die before two years, and the other 50 percent will not. The numbers

> > change after that. I don't know what they are by memory, but they are

> very

> > variable. I found them in a pdf.I am uploading the paper in which I took

> to

> > my gastro, and he commented the above opinion. . You can find it in the

> > " files section " . It's a PDF called Clinical out comes in

> cirrhosis. Thanks,

> > Love, Bobby

> >

> > Conflicting MELD score calculations

> >

> > Hi, I just got through with all my blood labs, endoscopy, CAT scan,

> > echocardiogram and 6 minute walk at the pulmonologist. What a relief

> > to put this behind me - temporary as it will be. I had a visit with

> > my gastroenterologist today and she told me my MELD score was 16. I

> > was shocked as I had used the UNOS calculator and calculated a score

> > of 12. She uses the Mayo Clinic calculator that takes into account

> > sodium. She went to the Mayo site and did the calculations with and

> > without sodium (they have both calculators on the site) and got 12

> > without the sodium and 16 with the sodium. She said she didn't know

> > why they were not the same as she thought they should both give the

> > same MELD score. Does anyone have any information about this?

> >

> > All my tests came out OK, but my liver is definitely going out on

> > me. I'll do what I can to slow the decline down. My gastro thought

> > it was fine that I am going to South America for a month tomorrow.

> > Truthfully, if it weren't for the ascites and edema, I wouldn't

> know

> > there was anything wrong with me. I did ask her about the 50% death

> > rate two years after the diagnosis of ascites and she said she had

> > never heard that. She said it is highly variable and unpredictable.

> > Hmmmmmm?

> >

> > This is my second post, but I read all of them and feel so lucky to

> > have found this group. It really helps so much not to feel alone.

> > Margaret

> >

> >