Re: Changes in MELD

[Guest guest]

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/

 

________________________________

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.

[Guest guest]

Welcome to the group Miss!!

I can not help you in any sense when it comes to a transplant; but, I wanted to

let you know how I can understand. 

I've fought liver disease for over a decade now.  Unfortunately, I am walking

my final journey!!  I managed to get through 2 Hep C treatments, which is a

type of chemo.  Today, I do not have Hep C and haven't had it since 2009. 

However, getting rid of it wasn't quite fast enough.  I was given the gift of

cancer even before I had completed the last treatment.  I've already gone

through a liver resection.  However, in 15 months the cancer was definitely

back.

But, I have no symptoms, except that my liver is starting to swell again.  In

fact, I try to say to people " have you ever meant a healthier looking walking

corpse? "   Hmm they don't think that's funny.  Truly, there is very little in

my life now, that can pull me down into that black well.  I have no time for

that kind of thinking anymore.  I am grateful everyday that my eyes open and I

have one more day to enjoy.  Also, I'm truly grateful that I found a really

strong bond with my spiritual faith.  The Creator is guiding me and I've

learned that I have to just be right beside the Spirit.  So, I try to be happy

for every day as well.

However, through it all and I mean for over a decade, I have never felt so much

as a twinge.  Our livers quietly start dying and don't let us know until close

to the end.  Then it won't be liver pain, it's all the things that you have

experienced.  Plus, I am still working as well...  I have a bookkeeping

business and procrastinated last year.  So, I have been determined to complete

all this work up to Dec 31/11.  Only another couple of weeks and hopefully I'll

have done it.  Then I plan on buying a very comfortable lounge chair to sit

outside under my awning.  I want to lay there with my headphones on and

probably fiddling with a laptop.  Then, on the very top of my bucket list is to

go to a Yanni concert.  Well, he'll be here where I am on Aug 5th!!  I already

have tickets, so I will not be getting sick before that.

Gloria

________________________________

 

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.

[Guest guest]

Thanks! I'm glad I came to this group.

I was lucky enough to have a really top-notch GI in the beginning, who was frank

with me about my diagnosis and the need for transplant. He really made sure I

was taken care of. (I'm no longer able to see him for complicated health

insurance reasons.) I'm seeing a hepatologist now, and I live in Boston, so

getting to " the big city " is fortunately not an issue for me. I'd be getting a

transplant at MassGeneral Hospital.

Yes, I am aware of what the MELD score is and I mostly understand what it means.

What I don't understand is why it would go down-- I had assumed I would only get

sicker as time went on. Again, I know this is something I should feel good

about, but I feel conflicted. On the one hand, everyone tells me my liver is

failing and that I need a transplant. On the other, my lab results are

improving? Am I sick or not sick? Everything I've read says cirrhosis is an

irreversible condition, so I don't understand why things seem to be moving

backwards.

I do understand that a lower MELD won't remove me from the list, it'll just make

me inactive (I research everything about my condition and liver transplantation

obsessively!) until/unless my score goes back up. But something in me is

recoiling from the idea of having to live that way for potentially a long time--

with a MELD that's high enough to cause concern, but not high enough for a

transplant (and around here, it would have to rise to around the mid-20s)...just

having that hanging over my head, dealing with the fatigue and fear and anxiety

for years.

I can't help but see the transplant as something I'd like to be done with

already. Which is probably the wrong way to think about it. But I want to get

back to my life and live normally and not feel exhausted all the time.

>

> 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/

>  

>

>

>

> ________________________________

>

> 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.

>

>

>

>

>

[Guest guest]

- I am at esld also. I don't know what my meld is now as I

do not qualify for a transplant because of my age, 68, and because I

have multiple other medical conditions. One of those conditions is

kidney disease. twice I have gotten as low a GFR ( their equivalent

of a meld for dialysis) that we figured dialysis was just around the

corner, then it went back up. At the present time I am on a downward

curve again. There is no explanation for it, and you probably will

never get an explanation for your MELD getting better. It just

happens. They don't even know what caused my cirrhosis, or the kidney

disease. Probably genetic, as well as my coronary and peripheral

artery disease and my thyroid problems. One doctor told me I just got

bad genes. I have learned to take the days as they come, letting God

be in control. I understand the frustration. When I was first

diagnosed with cirrhosis, I was told I had 2 to 3 years to live. When

2 years had gone by and nothing had changed, I asked to be sent to a

transplant center for evaluation. They were very nasty and told me I

would never get a transplant and wanted to know what made me think I

needed one. I walked out of there a mess. All my family and friend s

had spent the last two years thinking I was going to die at any time.

I almost felt guilty for not being ready to die. So, I asked to go to

a second center, this time one of my choosing, the Mayo Clinic in

Phoenix. Being from Minnesota, I had grown up thinking it was the

next thing to God. They confirmed that I would not qualify in AZ, but

when the time came I could try some other states. That was about 11

years ago, and as far as I know, my liver is about the same. This is

a very frustrating disease, and the best we can do is just accept

things as they come and not let the stress get us down. Since my

cirrhosis is of unknown origin, there really aren't any tests they can

do to determine how far along I am except to use the other organ

conditons as a sign of how it is doing, and the problems with my

kidneys are probably related. I don't post on here very often,

enjoying playing farmville, and usually exhausted, but know I am

concerned for you and everybody on this list.

I had an interesting experience last week. I got to see the coffee

grounds. I had an endoscopy scheduled for Thurs. at 5:15. When they

did it, they found blood all over my stomach, cauterized all the

bleeding spots they could find. They kept me in to redo on Friday, no

food except liquids. So, finally got to see the blood in my stools.

Had had a couple recently which made me question enough to ask for

test strips, but those afterwards had already been flushed before I

noticed them. The procedure was done at the request of my

hemotologist who can't figure out why I am anemic, was wondering if my

liver was causing some bleeding. But this isn't related because too

new, didn't have 18 months ago and been treated for anemia for 4

years, maybe closer to 5. But I saw the coffee grounds, and it is a

very apt term. Jan

On Sat, Apr 14, 2012 at 9:29 AM, miss_maxine687

wrote:

> 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.

>

>

>

>

>

> ------------------------------------

>

> Group Email:    livercirrhosissupport

> web address:

> http://groups.yahoo.com/group/livercirrhosissupport/

>

[Guest guest]

,

First let me start by welcoming you to this group. You will find many kind

people here who will help answer questions, give advice (completely and honestly

from their experiences) and share their stories.

Next...CONGRATS ON BEING PLACED ON THE TRANSPLANT LIST!!!!! What a great

accomplishment for you and your family. That is amazing gift in itself, in my

opinion

Now to your questions... your meld score will change based on how your liver is

functioning at the time of the tests. The medication you are taking is doing

it's job, and you are following doctors orders, so while your liver is not

actually improving, or healing itself, the medication is helping your body do

what it can no longer do on its own. That is the best way i can explain it to

you. As far as being dropped from the transplant list, i can;t really comment

for fact on that, as my husband was never a candidate for even being evaluated.

What I can say, is that i would assume (and we all know what that means, and

what it gets us) is that if you are a candidate, and following the dr.'s orders

enough to be eval'ed and placed on the list, that if your MELD scores were low

enough to to deactivate you, then if and when they went back up, you would be

able to be placed back on the list.

I sincerely wish you all the best luck in the world!

Kim

>

> 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.

>

[Guest guest]

Thanks! You've cleared up a lot of my confusion. That distinction between liver

function/improvement and the effect of all my medications makes sense. I knew

they would help alleviate symptoms, but I guess I hadn't thought of them as

taking over where my liver wasn't working.

I hadn't realized it was such an accomplishment to get on the list! From Day

One, everyone was saying they saw no reason why I shouldn't be put on the

list...although maybe the congrats comes from sitting through all those tests

and screenings, which was quite a process. I'm also on the younger side (I'm

24), so I'm told that makes me a better candidate since I should be able to have

a good long life expectancy after the transplant.

Being younger also makes it harder in some ways. I worry that I'll spend the

rest of my youth being sick and waiting for a transplant and not being able to

enjoy myself in the same way that others my age do. I don't mind that I can't

drink, but even aside from that-- just being able to do things spontaneously

without bringing the next dose of meds along, being able to eat out without

worrying whether my liver can handle it, being able to date and be social

without outing myself as an invalid with some serious medical baggage... I've

talked myself into some dark places over the past few months.

> >

> > 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.

> >

>

[Guest guest]

Hi:  I'm Jackie, and my husband, had his transplant in May, 2010 in

Hershey, PA.  One thing I can pass along while you're on the waiting list is to

be sure and cooperate with the transplant drs and follow their instructions to

the letter.  Believe me, they really appreciate this and will go the extra mile

when you do.  I can only speak from experience.  When was sick I provided

them with all the information they could possibly use.  I gave them a list with

the names and phone/fax numbers of all the local drs he sees, medication lists,

upcoming appointments, etc.  Whenever he was admitted to the hospital I saw to

it that the attending physician had the name of the liver transplant coordinator

at Hershey and emphasized that they were to do nothing without the authorization

of the transplant team.  is now 2 years post transplant and doing very

good!  We were at Hershey this past Fri for his 6 month clinic appointment and

I had a

conversation with the dr about this.  He indicated to me that our willingness

to follow all of the instructions of the transplant team had a real positive

impact on their decision to go ahead with his transplant.  I'm guessing that's

what they're looking for-people who will follow their instructions and make sure

they take their meds correctly and follow up without missing clinic

appointments.  There have been cases where people, once they get a transplant

will think 'ok.  I feel better now.  I don't need to take these pills

anymore.' and then they go into liver rejection.  No one wants to see that

happen.  Hang in there.  It sounds like you're doing everything right.  Hope

I've been helpful with this advice.  Jackie

________________________________

To: livercirrhosissupport

Sent: Tuesday, April 17, 2012 10:26 AM

Subject: Re: Changes in MELD

 

Thanks! You've cleared up a lot of my confusion. That distinction between liver

function/improvement and the effect of all my medications makes sense. I knew

they would help alleviate symptoms, but I guess I hadn't thought of them as

taking over where my liver wasn't working.

I hadn't realized it was such an accomplishment to get on the list! From Day

One, everyone was saying they saw no reason why I shouldn't be put on the

list...although maybe the congrats comes from sitting through all those tests

and screenings, which was quite a process. I'm also on the younger side (I'm

24), so I'm told that makes me a better candidate since I should be able to have

a good long life expectancy after the transplant.

Being younger also makes it harder in some ways. I worry that I'll spend the

rest of my youth being sick and waiting for a transplant and not being able to

enjoy myself in the same way that others my age do. I don't mind that I can't

drink, but even aside from that-- just being able to do things spontaneously

without bringing the next dose of meds along, being able to eat out without

worrying whether my liver can handle it, being able to date and be social

without outing myself as an invalid with some serious medical baggage... I've

talked myself into some dark places over the past few months.

> >

> > 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.

> >

>

[Guest guest]

Congratulations to you and your husband! Sometime I might like to ask you about

the post-transplant process and what that was like. I've been given a lot of

information about the immediate recovery process and what my hospital stay will

be like, but I'd love to know more about long-term lifestyle-- like whether

there are still any dietary restrictions or cautions, and what the long-term

medications are like.

I'm lucky enough that my transplant center is where I'm already receiving care--

both my primary care doctor and my hepatologist are located there.

I definitely tried to emphasize to the transplant team that I very much wanted

the transplant and would comply with anything. For the same reason, I've been

careful to follow instructions to the letter and to never skip doses and to

follow all the convoluted rules about when and how to take them.

I definitely am aware that I'll need to keep taking medications for life! With

autoimmune hepatitis, that would be the case whether I needed a transplant or

not. My body already treats my liver as if it were a foreign object, so

immunosuppressants will always be necessary for me. I can deal with that if I

have to.

> > >

> > > 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.

> > >

> >

>

>

>

>

>

[Guest guest]

Ok.  I can give you some information and tell you what we experienced.  Do you

have a family member or a good friend who will help you as you get sicker and

see that you get to your dr appointments?  Maybe that same person will help you

to keep track of your medications and post transplant appointments.  In my

husband's case that person was/is me.  After his transplant he was prescribed

Prograf but he had a seizure from it (thank goodness we were still in the

hospital) so they switched him to Gengraf.  He takes 2 different anti-rejection

meds; Gengraf and Myfortic.  These meds are " not nice to the kidneys " so he has

to watch for and avoid foods that are high in potassium.  At first he would go

for bloodwork twice a week and have clinic visits once a week.  They watched

him very carefully.  Then once they had confidence the meds were working good

they decreased the bloodwork to once a week and clinic visits every 2 weeks. 

Gradually they

decreased the amount of anti-rejection meds he is taking.  He will always be

on some degree of anti-rejection drug, but their goal is to have him take as

little as possible so that his liver will function well and his kidneys will not

be harmed.  The first 6 months were the most difficult for him.  Having been

thru such an ordeal with his illness he worried about each little pain he

experienced and I told the transplant surgeon that in 6 months time I had to go

from being a nurse to being a drill seargeant, and I hate being a drill

seargeant.  She told him that he needed to realize that the first year,

particularly the first 6 months are the most challenging.  He shouldn't worry

because they are monitoring him very closely and he needs to have confidence in

himself that he will be ok.  She told him that she has seen people worry

themselves into cancer, as worrying has an effect on an already compromised

immune system.  He has come too far to let

anything bad happen now; the worst is over and things will begin to get better

now.  It was as if someone threw a switch when she said that.  On the way home

from that clinic visit he told me, " I'm gonna get better every day from this day

on. "   And he did!  That was his turning point.  He began feeling more

motivated and had more confidence that life would be normal again.  Now 2 years

later it's as if he was never sick.  He's back to enjoying the activities he

did before he was sick and he is so proud of the fact that he's made a

comeback.  I'm proud of him too and I also look forward to that day when we can

celebrate with you as well.  You may have a sometimes difficult journey ahead

but never, never give up.  There is hope, and a wonderful 2nd chance at life

once you are on the other side of this.  I hope you will keep this message. 

Print it out and read these words whenever you feel you are having a difficult

time.  I pray this will

be of help to you when you need it.  Keeping you in prayer as always.  Love,

Jackie

________________________________

To: livercirrhosissupport

Sent: Tuesday, April 17, 2012 8:00 PM

Subject: Re: Changes in MELD

 

Congratulations to you and your husband! Sometime I might like to ask you about

the post-transplant process and what that was like. I've been given a lot of

information about the immediate recovery process and what my hospital stay will

be like, but I'd love to know more about long-term lifestyle-- like whether

there are still any dietary restrictions or cautions, and what the long-term

medications are like.

I'm lucky enough that my transplant center is where I'm already receiving care--

both my primary care doctor and my hepatologist are located there.

I definitely tried to emphasize to the transplant team that I very much wanted

the transplant and would comply with anything. For the same reason, I've been

careful to follow instructions to the letter and to never skip doses and to

follow all the convoluted rules about when and how to take them.

I definitely am aware that I'll need to keep taking medications for life! With

autoimmune hepatitis, that would be the case whether I needed a transplant or

not. My body already treats my liver as if it were a foreign object, so

immunosuppressants will always be necessary for me. I can deal with that if I

have to.

> > >

> > > 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.

> > >

> >

>

>

>

>

>

[Guest guest]

I've got grandchildren that are older than you!  LOL  Getting on a list so

fast is a feat.  But, now I can understand why and age has nothing to do with

it.  Don't worry about what might be in the future.  It's not here yet. 

Maybe a Mack truck will hit you instead of cirrhosis.  You have a long life

ahead of you.

I always knew that should it be offered, I would turn down a transplant. 

Someone like you is the very reason!!  I could not stand the thought that I

received a liver while a young person either died or got sicker.  It's just my

personal thoughts and certainly is not a suggestion to anyone.

Now, I have to tell you about my hero!!  My youngest niece!  She began her

battle with ovarian cancer at the rip old age of 19.  Fought it as well as she

could.  Right down to the daily shots.  Unfortunately, she lost both

ovaries.  But, being around her is absolutely inspirational by far.  One time

she put a caption on her Facebook that said - " Cancer is not a sentence, it's a

word " .  Then she told me once, that she knows her friends don't understand

things.  They are all still so young (she's 22).  But, the cancer has given

her a whole new view on life as a whole.  Even that brings tears to my eyes! 

But, she is also the youngest of my baby brothers 3 girls.  They were all very

much Daddy girls.  Then, he died in Jan 2011 from colon cancer!!  I still

can't think about it without tears.  I'm the oldest and been sick with this

liver for some time now.  But all of a sudden, my baby brother does an end

round around all of us and died of

his cancer.

I have terminal liver cancer now and have learned so so much about what is

important in life!!  Money, things, getting tangled up with the wrong partner -

everything is of no importance at my stage.  The onlyimportant thing to learn

is LOVE.  Accept everyone for just who they are and walk away from the negative

ones.  Every day that I wake up, I'm sooo grateful to begin again.  Truly, I

have no fear about dying.  I just fear the pain.  But, my Dr won't let me

suffer, I know.

Gloria

________________________________

 

Thanks! You've cleared up a lot of my confusion. That distinction between liver

function/improvement and the effect of all my medications makes sense. I knew

they would help alleviate symptoms, but I guess I hadn't thought of them as

taking over where my liver wasn't working.

I hadn't realized it was such an accomplishment to get on the list! From Day

One, everyone was saying they saw no reason why I shouldn't be put on the

list...although maybe the congrats comes from sitting through all those tests

and screenings, which was quite a process. I'm also on the younger side (I'm

24), so I'm told that makes me a better candidate since I should be able to have

a good long life expectancy after the transplant.

Being younger also makes it harder in some ways. I worry that I'll spend the

rest of my youth being sick and waiting for a transplant and not being able to

enjoy myself in the same way that others my age do. I don't mind that I can't

drink, but even aside from that-- just being able to do things spontaneously

without bringing the next dose of meds along, being able to eat out without

worrying whether my liver can handle it, being able to date and be social

without outing myself as an invalid with some serious medical baggage... I've

talked myself into some dark places over the past few months.

> >

> > 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.

> >

>

[Guest guest]

You are doing an amazing job of living your life....that in and of itself is an

inspiration. I have to tell you a story about my Dad's minister (an old family

friend also)

I had heard that he had cancer through my mother...so when I ran into him one

day...I told him I was so sorry to hear that he had cancer...and then I leaned

in to ask him.... " Is it terminal? " He laughed out loud in this great booming

voice...and I was not sure how to proceed.....and then he said " We are all

terminal sweetie!!

I have never forgotten that....it really puts a perspective on life that you

never forget....I am terminal. always and foremost....now how are you going to

live your life knowing that....LOL...it certainly changes things for me...

Becky

If you are going to worry, do not pray.

If you are going to pray, do not worry.

From: livercirrhosissupport

[mailto:livercirrhosissupport ] On Behalf Of Gloria

Sent: Wednesday, April 18, 2012 12:08 AM

To: livercirrhosissupport

Subject: Re: Re: Changes in MELD

I've got grandchildren that are older than you! LOL Getting on a list so fast

is a feat. But, now I can understand why and age has nothing to do with it.

Don't worry about what might be in the future. It's not here yet. Maybe a Mack

truck will hit you instead of cirrhosis. You have a long life ahead of you.

I always knew that should it be offered, I would turn down a transplant.

Someone like you is the very reason!! I could not stand the thought that I

received a liver while a young person either died or got sicker. It's just my

personal thoughts and certainly is not a suggestion to anyone.

Now, I have to tell you about my hero!! My youngest niece! She began her

battle with ovarian cancer at the rip old age of 19. Fought it as well as she

could. Right down to the daily shots. Unfortunately, she lost both ovaries.

But, being around her is absolutely inspirational by far. One time she put a

caption on her Facebook that said - " Cancer is not a sentence, it's a word " .

Then she told me once, that she knows her friends don't understand things. They

are all still so young (she's 22). But, the cancer has given her a whole new

view on life as a whole. Even that brings tears to my eyes! But, she is also

the youngest of my baby brothers 3 girls. They were all very much Daddy girls.

Then, he died in Jan 2011 from colon cancer!! I still can't think about it

without tears. I'm the oldest and been sick with this liver for some time now.

But all of a sudden, my baby brother does an end round around all of us and died

of

his cancer.

I have terminal liver cancer now and have learned so so much about what is

important in life!! Money, things, getting tangled up with the wrong partner -

everything is of no importance at my stage. The onlyimportant thing to learn is

LOVE. Accept everyone for just who they are and walk away from the negative

ones. Every day that I wake up, I'm sooo grateful to begin again. Truly, I

have no fear about dying. I just fear the pain. But, my Dr won't let me

suffer, I know.

Gloria

________________________________

Thanks! You've cleared up a lot of my confusion. That distinction between liver

function/improvement and the effect of all my medications makes sense. I knew

they would help alleviate symptoms, but I guess I hadn't thought of them as

taking over where my liver wasn't working.

I hadn't realized it was such an accomplishment to get on the list! From Day

One, everyone was saying they saw no reason why I shouldn't be put on the

list...although maybe the congrats comes from sitting through all those tests

and screenings, which was quite a process. I'm also on the younger side (I'm

24), so I'm told that makes me a better candidate since I should be able to have

a good long life expectancy after the transplant.

Being younger also makes it harder in some ways. I worry that I'll spend the

rest of my youth being sick and waiting for a transplant and not being able to

enjoy myself in the same way that others my age do. I don't mind that I can't

drink, but even aside from that-- just being able to do things spontaneously

without bringing the next dose of meds along, being able to eat out without

worrying whether my liver can handle it, being able to date and be social

without outing myself as an invalid with some serious medical baggage... I've

talked myself into some dark places over the past few months.

> >

> > 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.

> >

>

[Guest guest]

I have only been sick for 6 years or so. There are others here who have been

around liver disease much much longer. But I have never seen anyone " pull a

miracle " and suddenly get better... not need the transplant. I have seen a bunch

of people in your condition, MELD doing the rollercoaster thing. Sadly, in my

way of thinking, your MELD will probably go up and even maybe back down before

you get your liver. 20 is a pretty solid transplant-able score. In my world,

anyway. Good luck. You'll get your freesh leevah.*  I just KNOW it. Love,

Bobby  

* " freesh leevah " is a term used by my gastro interologist who is from

Witwatersrand University, Johannesburg

South Africa. lol

________________________________

To: livercirrhosissupport

Sent: Sunday, April 15, 2012 8:29 AM

Subject: Re: Changes in MELD

 

Thanks! I'm glad I came to this group.

I was lucky enough to have a really top-notch GI in the beginning, who was frank

with me about my diagnosis and the need for transplant. He really made sure I

was taken care of. (I'm no longer able to see him for complicated health

insurance reasons.) I'm seeing a hepatologist now, and I live in Boston, so

getting to " the big city " is fortunately not an issue for me. I'd be getting a

transplant at MassGeneral Hospital.

Yes, I am aware of what the MELD score is and I mostly understand what it means.

What I don't understand is why it would go down-- I had assumed I would only get

sicker as time went on. Again, I know this is something I should feel good

about, but I feel conflicted. On the one hand, everyone tells me my liver is

failing and that I need a transplant. On the other, my lab results are

improving? Am I sick or not sick? Everything I've read says cirrhosis is an

irreversible condition, so I don't understand why things seem to be moving

backwards.

I do understand that a lower MELD won't remove me from the list, it'll just make

me inactive (I research everything about my condition and liver transplantation

obsessively!) until/unless my score goes back up. But something in me is

recoiling from the idea of having to live that way for potentially a long time--

with a MELD that's high enough to cause concern, but not high enough for a

transplant (and around here, it would have to rise to around the mid-20s)...just

having that hanging over my head, dealing with the fatigue and fear and anxiety

for years.

I can't help but see the transplant as something I'd like to be done with

already. Which is probably the wrong way to think about it. But I want to get

back to my life and live normally and not feel exhausted all the time.

>

> 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/

>  

>

>

>

> ________________________________

>

> 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.

>

>

>

>

>

[Guest guest]

I also have a grandson older than you. And I agree with Gloria. I

could not have taken a cadaver liver for the same reasons she gave.

They should go to those who have their life ahead of them. It is

possible I could still go to Florida if my cirrhosis took a fast jump

and be approved for a transplant. Or I could get a living donor from

one of my kids or grandchldren, but I can't allow them to do that.

They have at least 1/2 their life to live, mine is entering the last

stages at almost 69. Others have the right to feel differently. And

for someone to offer an organ for transplant is certainly a great

gifr. Praying for you and everybody here. Jan

>

>

>

> I've got grandchildren that are older than you!  LOL  Getting on a list so

fast is a feat.  But, now I can understand why and age has nothing to do with

it.  Don't worry about what might be in the future.  It's not here yet.  Maybe a

Mack truck will hit you instead of cirrhosis.  You have a long life ahead of

you.

>

> I always knew that should it be offered, I would turn down a transplant. 

Someone like you is the very reason!!  I could not stand the thought that I

received a liver while a young person either died or got sicker.  It's just my

personal thoughts and certainly is not a suggestion to anyone.

>

> Now, I have to tell you about my hero!!  My youngest niece!  She began her

battle with ovarian cancer at the rip old age of 19.  Fought it as well as she

could.  Right down to the daily shots.  Unfortunately, she lost both ovaries. 

But, being around her is absolutely inspirational by far.  One time she put a

caption on her Facebook that said - " Cancer is not a sentence, it's a word " . 

Then she told me once, that she knows her friends don't understand things.  They

are all still so young (she's 22).  But, the cancer has given her a whole new

view on life as a whole.  Even that brings tears to my eyes!  But, she is also

the youngest of my baby brothers 3 girls.  They were all very much Daddy girls. 

Then, he died in Jan 2011 from colon cancer!!  I still can't think about it

without tears.  I'm the oldest and been sick with this liver for some time now. 

But all of a sudden, my baby brother does an end round around all of us and died

of

>  his cancer.

>

> I have terminal liver cancer now and have learned so so much about what is

important in life!!  Money, things, getting tangled up with the wrong partner -

everything is of no importance at my stage.  The onlyimportant thing to learn is

LOVE.  Accept everyone for just who they are and walk away from the negative

ones.  Every day that I wake up, I'm sooo grateful to begin again.  Truly, I

have no fear about dying.  I just fear the pain.  But, my Dr won't let me

suffer, I know.

>

> Gloria

>

>

>

> ________________________________

>

>

>

>

> Thanks! You've cleared up a lot of my confusion. That distinction between

liver function/improvement and the effect of all my medications makes sense. I

knew they would help alleviate symptoms, but I guess I hadn't thought of them as

taking over where my liver wasn't working.

>

> I hadn't realized it was such an accomplishment to get on the list! From Day

One, everyone was saying they saw no reason why I shouldn't be put on the

list...although maybe the congrats comes from sitting through all those tests

and screenings, which was quite a process. I'm also on the younger side (I'm

24), so I'm told that makes me a better candidate since I should be able to have

a good long life expectancy after the transplant.

>

> Being younger also makes it harder in some ways. I worry that I'll spend the

rest of my youth being sick and waiting for a transplant and not being able to

enjoy myself in the same way that others my age do. I don't mind that I can't

drink, but even aside from that-- just being able to do things spontaneously

without bringing the next dose of meds along, being able to eat out without

worrying whether my liver can handle it, being able to date and be social

without outing myself as an invalid with some serious medical baggage... I've

talked myself into some dark places over the past few months.

>

>

>> >

>> > 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.

>> >

>>

>

>

>

>

>

[Guest guest]

Thank you for sharing your story with me-- that means so much!

Yes, I am young enough that refusing a transplant seems almost inconceivable to

me, but for an older person, I can understand a little. But I know I have far to

much of my life to live-- so much to experience!-- that I'm anxious to get on

with that. Honestly, one of the first things I thought of after my diagnosis was

" But I haven't been to France yet! " (I have longed to go since I was five years

old and fell in love with the Monets at the Metropolitan Museum of Art. I was a

precocious five-year-old.) Someday, when my budget isn't all spent on student

loans and medical bills...

I admire your niece. I had a cancer scare myself at around that age (It turned

out to be nothing, though since the symptom was abnormally low WBC and platelet

counts, I wonder now if it had to do with my liver being inflamed). Just

thinking for a few days that I might have a terminal illness changed me, I

think, and certainly changed my relationship with my parents... that was the

moment I stopped being a whiny teenager and became an adult who appreciated

everything my parents had ever done for me.

I understand how scary and wrong-seeming it can be to lose a younger relative

like that. My mom's younger sister died after a long battle with lymphoma when

she was only 33, and my mom was deeply hurt, not only that her sister had died,

but that she had died first.

I also have a cousin who came very close to dying of a then-undiagnosed

autoimmune condition when she was only 3! I had only seen her a few times at

family get-togethers but I could barely sleep at night, thinking we might lose

her so young. (Fortunately, once diagnosed, she was able to be treated and is

now a very healthy and rambunctious 10-year-old.) Her positive attitude in light

of everything she's dealt with, and the amazing recovery she's made, are also a

source of inspiration to me. I hope that through the transplant process and

after the surgery, i am able to stay positive. I have always been an optimist at

heart... my brother likes to say I am an optimist when it comes to the big

picture, but a pessimist on the details...which gets me into trouble if I'm left

to my own thoughts for too long.

I hope that when your time comes you will feel only release, and no pain or

fear, and knowing you are loved.

> > >

> > > 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.

> > >

> >

>

>

>

>

>

[Guest guest]

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.

> >

> >

> >

> >

> >

[Guest guest]

You might want to check out my book, " The Mustard Seed " by Jackie Ellermann. 

In it I wrote alot about what you are experiencing now.  You can google it and

get it online.  Hang in there and stay brave.  We are all cheering you on as

you go thru the liver transplant process.  Jackie Ellermann

________________________________

To: livercirrhosissupport

Sent: Friday, April 20, 2012 8:31 PM

Subject: Re: Changes in MELD

 

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.

> >

> >

> >

> >

> >

[Guest guest]

I've met my fair share of people who were in denial they way they are in your AH

group. People are generally unaware that as of today there is no cure for end

stage liver disease.

A liver transplant is the only option, and hospice care in the end  if they

cant get a transplant. The amazing way livers can compensate tend to confuse the

general public. A person can be diagnosed with end stage liver disease and never

even get sick, but this would be because they have compensated disease, not

decompensated. I do understand what you are saying. As scary as it sounds to

contemplate undergoing a transplant, you are at least living in reality. Love,

Bobby

 

________________________________

To: livercirrhosissupport

Sent: Friday, April 20, 2012 6:31 PM

Subject: Re: Changes in MELD

 

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.

> >

> >

> >

> >

> >

[Guest guest]

The trouble with the AIH group was that most of them DIDN'T have ESLD. If caught

early, AIH is controllable with immunosuppressants and/or steroids. Which isn't

fun, but for most people, surgery is never even going to come up. Fibrosis

sometimes occurs, but usually not cirrhosis.

In my case, I was so asymptomatic that the AIH wasn't caught early, and when I

was diagnosed it was clear that cirrhosis had already taken place. But the AIH

group didn't seem to understand this at all. The attitude was something like, " I

don't need a transplant, so I don't see why you need one, " though I did explain

how my case was caught late...it was like they really didn't understand what

cirrhosis was. I think they thought it WAS reversible...maybe there was some

confusion with them as to mild scarring/fibrosis, and actual cirrhosis. As well

as compensated vs. decompensated forms. (My impression is that I'm on the

borderline there. I look well-compensated on the outside. On the inside...not so

much.)

So it's not that the AIH people had given up-- their conditions were mostly

under control, though like with many autoimmune disorders, they do experience

flares and in some cases, debilitating fatigue. But their unwillingness to

understand how far gone my case was and that yes, for me, surgery was THE only

long-term option (my GI doctor explained that to me very well, kindly but

firmly) may have been a form of denial.

> > >

> > > 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.

> > >

> > >

> > >

> > >

> > >