Re: Being on transplant list with a low MELD, and has been for years, why?

[Guest guest]

Being on transplant list ...

Hi, it's really great that you have been doing so well health-wise with your PSC. Keep up the good job!

My son, with PSC, who also lives in Austin is currently at MD undergoing testing and treatment for cholangiocarcinoma. He was well from 1999 until 03/06 without signs of PSC or UC following a J-pouch in 1999. Unfortunately, in my opinion he kind of ignored the fact that he had ever been sick because he was feeling so great for so many years. I wish he had gotten more regular and better health care throughout those years.

You will have to make your own decisions, but please do not forego regular health care with a knowledgeable gastroenterologist and hepatologist!

Chris

[Guest guest]

According to the UNOS policy, if your MELD is 10 or below you only

need to be recertified (new blood tests) every 12 months. If it is

11 to 18 then you need to be retested every 3 months.

(http://www.unos.org/PoliciesandBylaws2/policies/pdfs/policy_8.pdf)

If you are status 7 (inactive) you would not need to retested until

you felt the need to get back on the active list. I don't see any

drawbacks to going inactive in your situation. You will still be

seen by your local doctors who can follow your blood work and

calculate MELD score based on it. You know how you feel and can get

help and back on the active list if you experience a downturn. You

would probably avoid the annual testing (doppler ultrasound and

cardiac stress testing at my center) if you opted for the inactive

list. Transfering to NC probably will involve repeated tests whether

or not you are inactive.

My experience on the inactive list occurred before the MELD score

was used to prioritize allocations. I was put on the list early,

since at that time your waiting time was the biggest factor in

getting to the top of the list. The first time I was offered a

transplant I turned it down, and was placed on the inactive list.

About 14 months later I was ready to go back on the active list. I

had to go through some retesting and was back on the active list in

about 2 months. 9 months later I had my transplant. I almost got a

transplant after 6 months, I was called in and on my way to the

operating room when the liver was diverted to a more critically ill

patient. The last 3 months of waiting were the worst. It was obvious

to everyone I was sick and fatigue of ESLD was really affecting my

life. But fortunately a liver became available and the transplant

was a success.

Tim R

[Guest guest]

>

>

> Being on transplant list ...

>

> Hi, it's really great that you have been doing so well health-wise

with your PSC. Keep up the good job!

>

> My son, with PSC, who also lives in Austin is currently at MD

undergoing testing and treatment for cholangiocarcinoma. He

was well from 1999 until 03/06 without signs of PSC or UC following a

J-pouch in 1999. Unfortunately, in my opinion he kind of ignored the

fact that he had ever been sick because he was feeling so great for so

many years. I wish he had gotten more regular and better health care

throughout those years.

>

> You will have to make your own decisions, but please do not forego

regular health care with a knowledgeable gastroenterologist and

hepatologist!

>

> Chris

>

I definitely would not do that. I have a very good GI doc I see here,

and I'd still do ERCPs, colonscopies, blood work, etc, here with him.

The TX Liver center makes me feel so guilty everytime I talk to them,

like I'm not grateful to be on the list. It's just a huge nuissance,

and really hard to get off work, use PTO, etc. They ask me every time

too, " Are you working? " I want to shout, " Yes I'm working! " I think

they expect me to be at home wallowing and waiting with bated breath

for the next time I GET to go to Houston. I don't want to ignore my

conditions, but I also don't want to let it run my life.

[Guest guest]

>

> According to the UNOS policy, if your MELD is 10 or below you only

> need to be recertified (new blood tests) every 12 months. If it is

> 11 to 18 then you need to be retested every 3 months.

> (http://www.unos.org/PoliciesandBylaws2/policies/pdfs/policy_8.pdf)

> If you are status 7 (inactive) you would not need to retested until

> you felt the need to get back on the active list. I don't see any

> drawbacks to going inactive in your situation. You will still be

> seen by your local doctors who can follow your blood work and

> calculate MELD score based on it. You know how you feel and can get

> help and back on the active list if you experience a downturn. You

> would probably avoid the annual testing (doppler ultrasound and

> cardiac stress testing at my center) if you opted for the inactive

> list. Transfering to NC probably will involve repeated tests whether

> or not you are inactive.

>

> My experience on the inactive list occurred before the MELD score

> was used to prioritize allocations. I was put on the list early,

> since at that time your waiting time was the biggest factor in

> getting to the top of the list. The first time I was offered a

> transplant I turned it down, and was placed on the inactive list.

> About 14 months later I was ready to go back on the active list. I

> had to go through some retesting and was back on the active list in

> about 2 months. 9 months later I had my transplant. I almost got a

> transplant after 6 months, I was called in and on my way to the

> operating room when the liver was diverted to a more critically ill

> patient. The last 3 months of waiting were the worst. It was obvious

> to everyone I was sick and fatigue of ESLD was really affecting my

> life. But fortunately a liver became available and the transplant

> was a success.

>

> Tim R

>

Thanks for the info Tim, very enlightening. I need to find out

exactly what mine is. I can't remember if it is a single digit, or

around 10-12.