Re: Meld? and Getting Listed/everyone's right...

[Guest guest]

> The real reason Shauna (and many others) didn't get transplants wasn't

> some real or perceived bias in the system, but the organ donor shortage

> in general.

But wait, you're both right! My transplant team also stated that

people who have PSC complications other than cirrhosis have lower

chances of getting a cadaveric transplant under the MELD system. INR

increases with cirrhosis and high creatinine is a renal consequence of

extensive cirrhosis (hepato-renal syndrome). While bilirubin increases

with cholestasis, it often isn't enough to rate a cadaveric liver. I

think this isn't showing up in the stats because there are doubtless

other things that increase death rates in other liver diseases,

counterbalancing those with PSC who don't make it to transplant. I

recall reading that PSC patients have higher rates of living donor

transplants, I suppose in part due to hearing it's their best hope,

which it often is. So MELD is fairer to people with acute disease

than the previous system, but not as generous to people with

life-threatening conditions other than cirrhosis.

We need to encourage organ donation, work to prevent liver diseases

from preventable causes, like alcoholism, hepatitis and acetaminophen

overdose, and find ways of treating PSC more successfully, short of

transplant.

Martha (MA)

[Guest guest]

Amen! Thanks for a great summary.

Some times when you are sitting on a waiting list you focus on the

less relevant details.

> > The real reason Shauna (and many others) didn't get transplants

wasn't

> > some real or perceived bias in the system, but the organ donor

shortage

> > in general.

>

> But wait, you're both right! My transplant team also stated that

> people who have PSC complications other than cirrhosis have lower

> chances of getting a cadaveric transplant under the MELD system. INR

> increases with cirrhosis and high creatinine is a renal consequence of

> extensive cirrhosis (hepato-renal syndrome). While bilirubin increases

> with cholestasis, it often isn't enough to rate a cadaveric liver. I

> think this isn't showing up in the stats because there are doubtless

> other things that increase death rates in other liver diseases,

> counterbalancing those with PSC who don't make it to transplant. I

> recall reading that PSC patients have higher rates of living donor

> transplants, I suppose in part due to hearing it's their best hope,

> which it often is. So MELD is fairer to people with acute disease

> than the previous system, but not as generous to people with

> life-threatening conditions other than cirrhosis.

>

> We need to encourage organ donation, work to prevent liver diseases

> from preventable causes, like alcoholism, hepatitis and acetaminophen

> overdose, and find ways of treating PSC more successfully, short of

> transplant.

>

> Martha (MA)

>

[Guest guest]

Amen! Thanks for a great summary.

Some times when you are sitting on a waiting list you focus on the

less relevant details.

> > The real reason Shauna (and many others) didn't get transplants

wasn't

> > some real or perceived bias in the system, but the organ donor

shortage

> > in general.

>

> But wait, you're both right! My transplant team also stated that

> people who have PSC complications other than cirrhosis have lower

> chances of getting a cadaveric transplant under the MELD system. INR

> increases with cirrhosis and high creatinine is a renal consequence of

> extensive cirrhosis (hepato-renal syndrome). While bilirubin increases

> with cholestasis, it often isn't enough to rate a cadaveric liver. I

> think this isn't showing up in the stats because there are doubtless

> other things that increase death rates in other liver diseases,

> counterbalancing those with PSC who don't make it to transplant. I

> recall reading that PSC patients have higher rates of living donor

> transplants, I suppose in part due to hearing it's their best hope,

> which it often is. So MELD is fairer to people with acute disease

> than the previous system, but not as generous to people with

> life-threatening conditions other than cirrhosis.

>

> We need to encourage organ donation, work to prevent liver diseases

> from preventable causes, like alcoholism, hepatitis and acetaminophen

> overdose, and find ways of treating PSC more successfully, short of

> transplant.

>

> Martha (MA)

>

[Guest guest]

Amen! Thanks for a great summary.

Some times when you are sitting on a waiting list you focus on the

less relevant details.

> > The real reason Shauna (and many others) didn't get transplants

wasn't

> > some real or perceived bias in the system, but the organ donor

shortage

> > in general.

>

> But wait, you're both right! My transplant team also stated that

> people who have PSC complications other than cirrhosis have lower

> chances of getting a cadaveric transplant under the MELD system. INR

> increases with cirrhosis and high creatinine is a renal consequence of

> extensive cirrhosis (hepato-renal syndrome). While bilirubin increases

> with cholestasis, it often isn't enough to rate a cadaveric liver. I

> think this isn't showing up in the stats because there are doubtless

> other things that increase death rates in other liver diseases,

> counterbalancing those with PSC who don't make it to transplant. I

> recall reading that PSC patients have higher rates of living donor

> transplants, I suppose in part due to hearing it's their best hope,

> which it often is. So MELD is fairer to people with acute disease

> than the previous system, but not as generous to people with

> life-threatening conditions other than cirrhosis.

>

> We need to encourage organ donation, work to prevent liver diseases

> from preventable causes, like alcoholism, hepatitis and acetaminophen

> overdose, and find ways of treating PSC more successfully, short of

> transplant.

>

> Martha (MA)

>

[Guest guest]

Perhaps Jon’s longer wait had

something to do with a more “rare” blood type… e.g., Jim has

type A blood, and was told he’d have to wait “at least five years…

perhaps the point of coma/24 hours to death” for a cadaveric liver where

he was first evaluated (20 minutes away from our home, in La Jolla, California),

in the summer of 2000. (Side note: this was just prior to the “new”

MELD rules taking the place of the “old” MELD rules).

But what a marvelous message of hope to be

told, eh (she said, sarcastically)?!? Little wonder we abandoned (the

cadaveric) ship, changed directions, and swam to USC in Los Angeles for living donor surgery.

And even being transplanted sooner in Los

Angeles, Jim was still in pretty bad shape.

Maureen (wife of Jim, recently

turned 52, but now he prefers to “average” his age with our son –

aka his liver donor – , hee hee. UC '84, PSC '96, LRLTx # 36 @

USC in Los Angeles, California, 12/7/01; post-tx skin

cancer/melanoma issues, et.al., '03 - present); happy empty-nesters &

delighted grandparents to Stryder. Jillian & are expecting to

deliver Stryder’s little brother in a matter of just a few short weeks,

so I will be on busy Grammamma track again… out in Prescott, Arizona,

back home in CA, back out to AZ, back home again, etcetera, while Jim holds

down the fort. Fun times!).

From: [mailto: ] On Behalf Of Barb Henshaw

Sent: Tuesday, May 16, 2006 4:10

PM; To:

Subject: RE: Re:

Meld? and Getting Listed/everyone's right...

-----Original Message-----

" jms_758 " wrote:

My MELD score was 28. Because my creatine never crept up I couldn't get

any higher.

-----Original Message----- Martha

You still didn't reach the top of the

list at 28? With

a MELD like that some regions would transplant you right away.

In

some centers, he would have been transplanted before he even got to 28!

Barb in Texas

[Guest guest]

I'm from the Bay Area, and my transplant was done at Stanford.

> >

> > I think this was my case. My MELD score was 28. Because my creatine

> > never crept up I couldn't get any higher.

> >

> > I was just about dead, so my doctor was able to get UNOS to raise my

> > MELD score to 33, and I was finally transplanted.

> >

> > This was in June 2004

>

> Wow, that's quite a high MELD! You still didn't reach the top of the

> list at 28? It's good that your doctor went to bat for you. What UNOS

> region was this? With a MELD like that some regions would transplant

> you right away. Another difficulty with the system. If you need to

> rent and apartment in another region that transplants at a lower

> average score, financial solvency affects who gets transplants too.

> Hope you are doing well.

> Martha

> 43, UC 1979, PSC 1992

>

[Guest guest]

I'm from the Bay Area, and my transplant was done at Stanford.

> >

> > I think this was my case. My MELD score was 28. Because my creatine

> > never crept up I couldn't get any higher.

> >

> > I was just about dead, so my doctor was able to get UNOS to raise my

> > MELD score to 33, and I was finally transplanted.

> >

> > This was in June 2004

>

> Wow, that's quite a high MELD! You still didn't reach the top of the

> list at 28? It's good that your doctor went to bat for you. What UNOS

> region was this? With a MELD like that some regions would transplant

> you right away. Another difficulty with the system. If you need to

> rent and apartment in another region that transplants at a lower

> average score, financial solvency affects who gets transplants too.

> Hope you are doing well.

> Martha

> 43, UC 1979, PSC 1992

>