Re: Cirrhosis - Fibrosis

[Guest guest]

Hi ,

Have your wife's doctors explained how they determined that she has cirrhosis

without doing a biopsy? It would be interesting to know which levels of which

labs are used for diagnosing diagnosis. From everything I've heard so far, if

a biopsy can be avoided, it should. A liver biopsy is not without risk of it's

own. My doctors have commented a couple of times that liver biopsy can be

risky for bleeding, especially for people with a high prothrombin (blood

clotting) time. Since my original biopsy in November 1997, there's been no

suggestion of doing another. I suppose that if there were a radical downturn

one might be done... but I wonder what the point would be since they already

know I have level IV cirrhosis.

I saw a new Rheumatologist today and he said something interesting that I

hadn't heard before while he was reviewing my lab records. He said that stage

(grade?) 4 AIH means cirrhosis vs. stage 3 indicating fibrosis, assumedly in

process to becoming cirrhosis.

>

> The survival rates you mention - aren't those statistics based on untreated

> AIH? I've heard similar statistics but I've also heard a 10 year survival

> rate for untreated AIH. I'm not sure that they know and I AM sure that it

> depends on how long the disease has existed prior to diagnosis. In my case,

> and this is true of many of us, it's highly probably that I'd had undiagnosed

> and untreated AIH for as long as 18 years before I finally was diagnosed and

> started taking meds. In my case, ignorance was bliss. I didn't feel that

> bad and most of the medical problems that I had passed in time. I feel like

> I had 18 years without the worry I might have had, had I known.

>

> I think that the transplant wait list time span might be deceptive. I'm

> semi-guessing here, but I believe that the longer waits are for people who

> have a gradually deteriorating condition that's not satisfactorily responsive

> to treatment. However, even if someone is at the bottom of the list, if

> their life expectancy suddenly changes to 7 days or less, they are moved to

> the top of the list, and that's the way it should be. Of course, that

> doesn't guarantee that a suitable liver will become available during that

> short and critical period of time. Perhpas Barbara Ann or one of the others

> who have already had transplants can confirm or correct my understanding.

> Health age does seem to be a very pertinent factor and I was even told that

> this is why they like to do pre-transplant evaluations as soon as possible,

> because they want to test while the candidate is in the best possible

> health. This is also why a transplant center might insist (as mine has) on

> extreme tests to rule out other possible medical problems like heart disease

> and various forms of cancer. They do NOT want to do a transplant on someone

> with an untreated heart condition who might die on the table, thus not only

> costing a life, but also a liver that could have been used by someone

> healthier, and this tragedy would also downgrade their success ratio

> statistics.

Ironic that the healthier we are the better our chances are of getting a liver

transplant.

I know that you and your wife are both relieved to now feel like you're

getting some badly needed attention and answers. I hope the tests go well

without incident and that the everything goes smoothly from now on. Most of

all, I hope that your wife goes into remission. That would be the best news of

all.

Take care,

Geri