Re: Cheryl - Questions

[Guest guest]

Cheryl,

MELD scores depend on three lab values:

INR (how well your blood clots)

Creatinine (how well your kidneys work)

Bilirubin (how well your body processes bile - the primary product of

the liver)

Of the three of these values, bilirubin counts the least. Depending

on the other values, a jump of two to three points of bilirubin is

sometimes necessary to raise your MELD score.

With a MELD of 6, you are below the UNOS standard for " active "

listing. Once you get above 7, a transplant center can list you. With

that said, each transplant center has its own standards for when to

list patients. Some want to get you listed early so that you can

build waiting time, which is only important if there is a tie between

two people who match the same organ. Other centers prefer to have you

actually be closer to needing the transplant *NOW*. Your doctor

probably has a feel for what the center he's recommending prefers.

As far as time to transplant - well, that varies greatly from region

to region. On the UNOS web site (www.unos.org) is data about each

region and each center. You can use this to see how long patients

wait for organs in a given area. You'll see that the wait also varies

by blood type. I know this doesn't answer your question, but really,

there is no definitive answer. By looking at the data, you can see

where you're more apt to have to wait longer, but beyond that, no one

can say when an organ will be available (unless you find a living

donor).

I haven't applied for disability, though I have a friend who is

encouraging me to do so. We think I've worked enough time in the last

ten years to be eligible to apply, though right now, I'm a stay at

home mom. Since I haven't started the process, I can't tell you more

than that...I'll be interested to hear others' experiences as they

reply.

Best of luck,

Deb in VA

AIH 1997, PSC 1998, UC 1999, Listed Ltx 2001, MELD 20

If I am at a 6 what does

that mean

> in terms of when I may get a transplant. It seems like if my

bilirubin

> jumps a few points I'll be at a 10 and my doc said that's when

they " work

> you over " for transplant?

>

> Also, is anybody in the group on disability?

[Guest guest]

So does that mean that after my MELD score is at a 10, which my doc says is

the magical number, I can go on the wait list? How do they actually decide

whether you are needing a transplant or not. Can you be on the transplant

list, but not actualy needy enough? I'm so confused. Sorry. If anybody

can help me sort though this.

Cheryl

>Reply-To:

>To:

>Subject: Re: Cheryl - Questions

>Date: Sat, 14 Aug 2004 05:26:16 -0000

>

>Cheryl,

>MELD scores depend on three lab values:

>

>INR (how well your blood clots)

>Creatinine (how well your kidneys work)

>Bilirubin (how well your body processes bile - the primary product of

>the liver)

>

>Of the three of these values, bilirubin counts the least. Depending

>on the other values, a jump of two to three points of bilirubin is

>sometimes necessary to raise your MELD score.

>

>With a MELD of 6, you are below the UNOS standard for " active "

>listing. Once you get above 7, a transplant center can list you. With

>that said, each transplant center has its own standards for when to

>list patients. Some want to get you listed early so that you can

>build waiting time, which is only important if there is a tie between

>two people who match the same organ. Other centers prefer to have you

>actually be closer to needing the transplant *NOW*. Your doctor

>probably has a feel for what the center he's recommending prefers.

>

>As far as time to transplant - well, that varies greatly from region

>to region. On the UNOS web site (www.unos.org) is data about each

>region and each center. You can use this to see how long patients

>wait for organs in a given area. You'll see that the wait also varies

>by blood type. I know this doesn't answer your question, but really,

>there is no definitive answer. By looking at the data, you can see

>where you're more apt to have to wait longer, but beyond that, no one

>can say when an organ will be available (unless you find a living

>donor).

>

>I haven't applied for disability, though I have a friend who is

>encouraging me to do so. We think I've worked enough time in the last

>ten years to be eligible to apply, though right now, I'm a stay at

>home mom. Since I haven't started the process, I can't tell you more

>than that...I'll be interested to hear others' experiences as they

>reply.

>

>Best of luck,

>Deb in VA

>AIH 1997, PSC 1998, UC 1999, Listed Ltx 2001, MELD 20

>

>

> If I am at a 6 what does

>that mean

> > in terms of when I may get a transplant. It seems like if my

>bilirubin

> > jumps a few points I'll be at a 10 and my doc said that's when

>they " work

> > you over " for transplant?

> >

> > Also, is anybody in the group on disability?

>

_________________________________________________________________

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[Guest guest]

Cheryl,

MELD scoring is a difficult subject in general. I'm sorry if I added

to your confusion. In message 62327 Shauna does a good job talking

about what the scoring means about how sick an individual is.

Basicially, once you're listed, you're listed. However, if you MELD

drops below 7 or you become temporarily too sick for transplant, then

you're placed on inactive status. describes how this was

discussed for him in message 62949. Once the situation has changed

(MELD goes above 7 or the illness resolves), then you're placed back

on the active list.

There are countless posts where this is all hashed out, and the

reason I'm referring you there is that it is a difficult subject and

I'm having difficulty explaining it well. Maybe someone else will

jump in? Another post you might find helpful is #62621 since it

specifically details changes in UNOS policy... I've only scratched

the surface.

In her post, Shauna suggested looking at this particular part of the

OPTN data: http://www.optn.org/AR2003/Chapter_X_AR_CD.htm

The direct link to the page with all the UNOS policies is:

http://www.unos.org/policiesandbylaws/policies.asp?resources=true

To evaluate you for listing, each center decides what array of tests

are necessary for you to complete. Once you've had all the tests and

they've evaluated your case, then they decide whether to list you for

transplant or not. The two centers where I've been evaluated required

the following: Chest X-Ray, MRI, Blood Work, and EKG. One of the

centers required a note from my dentist, and the other required a

consulation with a psychaitrist. Both required meeting with their

staff, including the doctors, transplant coordinator, and the social

worker. All of this varies by center, though.

If you have trouble sorting through the UNOS data, then I'd prepare a

list of questions for the transplant team or your doctor, if he/she

knows specifics about the center:

My questions would include:

What is the criteria for listing at the center?

What kind of tests am I likely to have to undergo to be listed?

What happens if my MELD drops below 7?

How high are MELD scores typically when a patient receives a liver at

this center?

How long does someone with my blood type typically wait for a liver

at this center?

What is the success rate for the center (mortality)?

What is the complication rate for the center?

I hope this answers your questions. If not, perhaps someone else can

help...Deb in VA

AIH 1997, PSC 1998, UC 1999, Listed Ltx 2001, MELD 20

> So does that mean that after my MELD score is at a 10, which my doc

says is

> the magical number, I can go on the wait list? How do they

actually decide

> whether you are needing a transplant or not. Can you be on the

transplant

> list, but not actualy needy enough? I'm so confused. Sorry. If

anybody

> can help me sort though this.

>

> Cheryl>