Cirrhosis

[Guest guest]

Bobby can explain about the cirrhosis far better than I can; but, I'll give you

my understanding of it.

The liver is an amazing organ and the only one that can regenerate itself. 

Providing that whatever is attacking it, is stopped.  In your case,

unfortunately - that means the AIH.  For me it was the Hep C that I certainly

didn't know I had.  I don't have it now either, but now the cancer will do the

final work.  The liver will endeavor to build around the dead cells

(cirrhosis); but, it could get very tired of that too, such as alcoholics that

refuse to quit drinking, and undiagnosed Hepatitis of any kind.

Without even knowing your age, of course you should do every thing you can to

continue life!!  Personally, I went through 2 treatments of meds for the Hep C

and they were 48 weeks each and it's with a form of chemo.  Then, just before I

completed the last treatment, my Gastro had to tell me that it was highly likely

that I had liver cancer.  So, the transplant Dr performed the one step down

from a transplant, a resection.  Unfortunately, just 15 months after that

operation, the cancer was back.  Also, the Drs believe that the cancer is also

now outside of the liver, they just don't know whereyet.

So you see, I have already put a decade into this war for my liver.      I

remember telling a fella just a while back, that I fought for my liver because,

I didn't think I had a choice.  But, last October, I realized that I did have a

choice!!  Now, the only thing that can be done, is trying to shrink the tumors,

making me sick; but, alive for another few months.  The question would be -

" how many times will you do this before more tumors are popping up?  I said

Thanks - but No Thanks.  I decided that I wanted a quality of life now and not

the quantity.  I had very little quality while fighting the Hep C.  My

decision not to have any more procedures, is absolutely mine alone.  I would

neverrecommend it for anyone else.

My heart goes out to anyone that AIH.  I remember well, the shock of learning

that I had Hep C and that it had already severely damaged my liver.  I believe

that a transplant is the only way of stopping AIH.   The way you describe that

group, sounds like everyone has given up and are just putting in time.  You

will not find that attitude here.  There a a lot of members that were actually

the caregivers.  I believe that they deserve as much acknowledgement as the

patient.  So know that, with my limited knowledge about transplants I'll be

here for whatever time is allotted and will support and understand your dilemma.

Gloria

________________________________

 

I've accepted that cirrhosis isn't reversible. That's why it is confusing for me

to see the MELD score fluctuate. But I guess nothing in life ever follows the

textbook exactly, does it?

After being diagnosed, I had also joined a support group for autoimmune

hepatitis, and the responses I got there were very different from the kind

encouragement and support I've received here. It seemed like people in the AIH

group didn't want to hear talk of transplants at all. They kept trying to say my

doctor was probably wrong and that I probably WOULD pull a miracle recovery

(what???), that I didn't need a transplant and shouldn't try to get on the list

at all!

I was shocked at those comments and they made me feel more lost and isolated

than ever. Especially those who said I shouldn't even try to get on the

transplant list! I don't think they were giving me bad advice deliberately, but

I was left feeling like they didn't understand how far my disease had

progressed. I repeated that I had cirrhosis, and that was irreversible, and I

just kept hearing back that all I needed was a second opinion. (I've seen a GI

and a hepatologist and they've both told me the exact same thing, and I feel

100% confident about their expertise.)

Anyway, now that I've rambled so much...

Thanks again to everyone who has commented or shared their story with me. Your

support makes such a difference. My family and friends have been amazing

throughout this whole process, but it means so much to be able to hear from

others who share my condition.

I will keep you all updated on how the transplant process goes for me. I have

some anxiety, but about the surgery itself, I'm not afraid.

I always promised myself I'd write a novel someday. And I'm MUCH too stubborn to

let myself die before that happens. I will get through that transplant by sheer

force of will if necessary.

> >

> > Dear , (hope I got your name right.)

> > Welcome to our group. I am sorry about your diagnosis, but congrats to you

on getting listed for a transplant. It is quite an accomplishment! Most people

come to this group lost and confused and have to be convinced to take themselves

to a transplant center in a big city so that they might live.  (There

are a LOT of small town doctors who think that the final decision is thiers,

instead of the transplant surgeon... silly, huh?  You have a couple of

really good questions. MELD is a mathematical predictor of one week

mortality.  40 =high chance of dying within the week, 6 = almost zero

chance of dying within the week.   A person with confirmed liver

disease who scores above a 10 should be evaluated for placement ion the

list.  You need to be aware that you might be active and inactive, and

go up and down over and over, but unless you are officially " dropped " from the

list, you need not worry about your

meld going low. This means that

> you liver is

> > doing much better for the time being. I understand your concern, but it is

a thing to celebrate, not mourn.  It will probably come back up again.

Your disease is autoimmune, so it's not like us alcoholics who can quit

drinking, and cross our fingers. We don't know how to stop the insult to your

liver. You might be inactive, but you shouldn't be dropped from the list

altogether.  This is if everything in your area  is equal with

the nationwide norm .  Let me put it this way, I have never heard of a

person being permanently dropped from the transplant list for going down in MELD

score.  Being at 20 means that you were fairly sick. In Denver, you

could get the next available liver with a score like that. In LA and Dallas,

though, you might need something in the 30's or more. Please ask your transplant

coordinator. They get paid to have all the answers for

YOU.    GOOD LUCK. Love, Bobby,

group moderator

> > http://sweetlorrane.blogspot.com/

> >  

> >

> >

> >

> > ________________________________

> > From: miss_maxine687 <michelle.a.labbe@>

> > To: livercirrhosissupport

> > Sent: Saturday, April 14, 2012 10:29 AM

> > Subject: Changes in MELD

> >

> >

> >  

> > As of last week, I was officially placed on the waiting list for a

transplant. I'm feeling equal parts scared and exhausted and relieved. I'm glad

that a transplant will be possible for me, but I wish I could stop feeling so

anxious about it all the time.

> >

> > But I'm also feeling confused about my MELD and how sick/healthy I really

am. I was diagnosed with autoimmune hepatitis and cirrhosis/ESLD in November,

and I was almost completely asymptomatic, at least outwardly. I never would have

known I was sick.

> >

> > When I was first diagnosed, following a liver biopsy, my MELD was 19. It

seemed terrifyingly high to me at the time. I was still processing the idea that

I was less than healthy.

> >

> > Since then I've been working to get my condition under control, manage all

the complications we found out about (ascites, varices, portal hypertension),

and get my name on the transplant list.

> >

> > But now that my name's been added, I've been told my MELD is 15, and I'm

having mixed feelings about it. I guess I should feel good that my MELD is

lower... I just don't understand what that means exactly. From what I

understand, my condition is not reversible, and at this stage my liver can no

longer heal itself. So why is my score going down?

> >

> > And if it goes down another point, I'll be de-activated on the transplant

list. So in a way I also feel like all that work and all those tests I ran and

all the stress I went through might be for nothing. I don't get it! I don't know

how to feel about this at all.

> >

> > But I should be glad as well that I'm not as sick as I might be, that I'm

not in pain and I'm mostly still able to manage day-to-day life, and that I am

outwardly healthy. I'm able to work and do most of the things I want to do.

Though I find my medication regimen hard to deal with at times.

> >

> > I was wondering what experiences you all have had with changes or

fluctuations in MELD score...and/or coping with the waiting list.

> >

> > The one thing I keep thinking is that I wish this could be over and that I

could get back to my life, whatever that means. I guess maybe there is no going

back, transplant or no, my life's never going to be as simple as it was and

there are always going to be lots of medications and immunosuppressants in my

future.

> >

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> >

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> >