Re: multilisting, reasons for tx

[Guest guest]

> However, with a MELD score of 20 you

> obviously have ESLD and Cirrhosis for your labs to be that bad.

Dear & Deb,

I hesitate to risk opening the whole MELD can o' worms, but perhaps your

" evaluators, " Deb, were drawing a distinction between *decompensated*

cirrhosis (i.e. Cirrhosis with Portal Hypertension, Varices, Splenomegaly,

Ascites/Edema or Encephalopathy) and " just " cirrhosis? One can have

cirrhosis without ESLD (as I did in my own case for many years). I realize

some centers will list based on other criteria but perhaps this possible

center is not one of these and will only list for decompensated cirrhosis.

This would explain, in part, why their waiting list is shorter.

And is it not also possible (speaking generally here and not with regards

to your MELD score, Deb) that one can have a MELD score of, say, 20

without ESLD/decompensated cirrhosis? This might be the case, for example,

if one were taking antibiotics and one's CR and BR were affected or, as

frequently is the case with cholestatic liver disease, there is some

cholangitis present. I realize that the MELD model has been verified and

accepted for all types of liver disease, including cholestatic, but I do

think it is sometimes picking up other things, like dehydration, and not

others (like quality of life).

Take care,

Shauna (29, AIH'86, Crohns'95, PSC'99, listed @ Duke, MELD =19)

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[Guest guest]

> However, with a MELD score of 20 you

> obviously have ESLD and Cirrhosis for your labs to be that bad.

Dear & Deb,

I hesitate to risk opening the whole MELD can o' worms, but perhaps your

" evaluators, " Deb, were drawing a distinction between *decompensated*

cirrhosis (i.e. Cirrhosis with Portal Hypertension, Varices, Splenomegaly,

Ascites/Edema or Encephalopathy) and " just " cirrhosis? One can have

cirrhosis without ESLD (as I did in my own case for many years). I realize

some centers will list based on other criteria but perhaps this possible

center is not one of these and will only list for decompensated cirrhosis.

This would explain, in part, why their waiting list is shorter.

And is it not also possible (speaking generally here and not with regards

to your MELD score, Deb) that one can have a MELD score of, say, 20

without ESLD/decompensated cirrhosis? This might be the case, for example,

if one were taking antibiotics and one's CR and BR were affected or, as

frequently is the case with cholestatic liver disease, there is some

cholangitis present. I realize that the MELD model has been verified and

accepted for all types of liver disease, including cholestatic, but I do

think it is sometimes picking up other things, like dehydration, and not

others (like quality of life).

Take care,

Shauna (29, AIH'86, Crohns'95, PSC'99, listed @ Duke, MELD =19)

--

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[Guest guest]

Shauna,

I don't disagree with your premise here. When speaking about MELD of

20 I was thinking more of Deb's case specifically where her MELD has

been in th 18-20 range for quite some time. In the scenario you

suggested I would generally think you would see greater peaks and

valleys in the MELD score as antibiotics were stopped and started

although I guess if I remember correctly Deb is on continual

antibiotics. But if that is the case then I think she would qualify

under the title of " recurring cholangitis " perhaps?

I also agree that often Cirrhosis by iteself does not necessarily

qualify you for listing and there are many stages of cirrhosis. In

my last biopsy I had the begiining stages of cirrhosis but I am

certainly not sick enough to be listed yet. So I would agree that

there needs to be other symptoms as well contributing to the whole

picture. Of course each center is different in regards to the

evaluation/criteria for listing patients.

I might suggest the following line of questioning with the doctor in

this case to clarify his position. What is condition is causing my

MELD score to be 20? Do you agree I have PSC? Do you agree that PSC

in most cases leads to ESLD and Cirrhosis? Do you agree that I have

a history of recurring cholangitis attacks requiring continual

antibiotic therapy? Do you agree that my quality of life has been

significantly impacted by liver disease? If the answer is yes to all

these then what additional criteria are you looking for?

Just my thoughts...

in Seattle

[Guest guest]

Hah, My dad is a judge if that counts for anything but alas the

leagal profession was not my calling.

> Your suggested " line of questioning " at the end of your email is

very

> good. You aren't by any chance a lawyer?

>

> Thanks for your reply,

> Shauna