Re: No Room At the Inn/ mental competence in tx

[Guest guest]

In the mid-90s, Jensen was turned down as a candidate for a

heart-lung transplant by the University of California at San Diego.

She was in her early 30s and living independently. She also had Down

syndrome.

She filed suit, won her case, inspired state legislation in

California, became involved with disabilities issues on a national

level.

She got her transplant but only lived a year and a half afterwards.

Her actions drew more attention to the whole issue of allocation of

scare resources. It also prompted a lot of transplant centers to be

more explicit in their criteria for candidates. For the most part,

the emphasis now is not on whether a particiular individual is

CAPABLE of following post-tx care directions, but whether that

particular individual is LIKELY to follow post-tx directions. Which

accounts in part for the increased attention to a patient's family

and social supports some of you have commented on.

Jensen was being evaluated at the same time my son was. I

watched her case carefully because Quantell's IQ puts him in the

retarded range. I also had some frank discussions with the tx team.

Q's work-up included an extra layer of developmental-related stuff,

but the level of scrutiny was lower than for an adult, becasuse with

any kids the onus of compliance falls on the parent.

Interestingly, my OR waiting room vigil was shared for awhile by the

parents of a 20something who was having a heart transplant. We talked

about raising chronic kids and the wierd comfort in the familiarity

of the hospital. But it wasn't until a week later when we-the-parents

met each other's kids and both realized we shared another major

common denominator.

Pam

(mom to Quantell, 16, dx 1996, tx 2001, dx recurrance with AIH

overlap 2006)

[Guest guest]

In the mid-90s, Jensen was turned down as a candidate for a

heart-lung transplant by the University of California at San Diego.

She was in her early 30s and living independently. She also had Down

syndrome.

She filed suit, won her case, inspired state legislation in

California, became involved with disabilities issues on a national

level.

She got her transplant but only lived a year and a half afterwards.

Her actions drew more attention to the whole issue of allocation of

scare resources. It also prompted a lot of transplant centers to be

more explicit in their criteria for candidates. For the most part,

the emphasis now is not on whether a particiular individual is

CAPABLE of following post-tx care directions, but whether that

particular individual is LIKELY to follow post-tx directions. Which

accounts in part for the increased attention to a patient's family

and social supports some of you have commented on.

Jensen was being evaluated at the same time my son was. I

watched her case carefully because Quantell's IQ puts him in the

retarded range. I also had some frank discussions with the tx team.

Q's work-up included an extra layer of developmental-related stuff,

but the level of scrutiny was lower than for an adult, becasuse with

any kids the onus of compliance falls on the parent.

Interestingly, my OR waiting room vigil was shared for awhile by the

parents of a 20something who was having a heart transplant. We talked

about raising chronic kids and the wierd comfort in the familiarity

of the hospital. But it wasn't until a week later when we-the-parents

met each other's kids and both realized we shared another major

common denominator.

Pam

(mom to Quantell, 16, dx 1996, tx 2001, dx recurrance with AIH

overlap 2006)