When to get listed?

[Guest guest]

I was diagnosed with PSC in May of '07, I have been to Baylor in Tx

for a pre-transplant evaluation. My meld is only 6. I have been

accepted to be listed on the transplant list, but when is the best

time to get listed? Should I wait until my meld is higher? What are

the advantage or disadvantage to getting listed now or later?

46 yrs old

[Guest guest]

>

> ... My meld is only 6. I have been

> accepted to be listed on the transplant list, but when is the best

> time to get listed? Should I wait until my meld is higher? What are

> the advantage or disadvantage to getting listed now or later?

Ideally, when you are ready to get a transplant and shortly before you

are called for one, minimizing the time spent WAITING for the call.

With a MELD of 6, in most cases, you would not be advised to get a

transplant immediately. Usually the risk/benefit swing toward

transplant when your MELD reaches 15. Depending on your transplant

center and blood type, transplantees generally get called when their

MELD is anywhere from high teens to high twenties. I was on the

waiting list almost two and a half years before I got a transplant

this year in MI. I was listed at a MELD of 22, got better control of

things due to closer monitoring while on the list, dropped to a 18

before gradually rising to a 24 when I got the call. During the

waiting period I was occasionally at the top of the list for my blood

type and always among the top ten. So while there were times that I

was far enough down so I was confident I would not get called, most of

the time a few others being sick or otherwise unavailable would have

resulted in a much earlier call.

Advantages of being listed:

The transplant team knows you and knows you are ready for transplant.

You'll be ahead of other with the same MELD who are listed later.

You'll receive regular medical attention during your wait with regular

blood test to recertify you.

Disadvantages:

You'll be waiting for a liver transplant call.

You have to have recertification blood test on a regular basis.

Travel to the transplant center for regular appointments (if it is

several hours away this can be a big deal).

Tim R, tx #3 7/7/07

[Guest guest]

-----Original

Message-----

I was diagnosed with PSC in May of '07, I have been to Baylor in

Tx for a pre-transplant evaluation. My meld is only 6. I have been

accepted to be listed on the transplant list, but when is the best time to get

listed? Should I wait until my meld is higher? What are

the advantage or disadvantage to getting listed now or later?

Hi ,

From one Texan to

another - If Baylor wants to list you now, MHO is - by

all means get listed. If you wait

too long you’ll have to go through the whole evaluation all over again. Getting listed, even at a low MELD

assures that you will be tested and monitored on a regular basis, that’s an

important part of keeping you as healthy as possible for as long as possible. Being listed also insures you’ll be

ready and have all your ducks in a row, if the need arises for a transplant. It’s also good and very reassuring to

know that you’ll have very good doctors at your beck and call.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas