Re: Re: Article:Man gets liver after using billboards, Net

[Guest guest]

Andi,

I think it is quite the ethically sticky situation. If the billboard and

internet ads (surely not cheap) were successful in generating *new* donors

(people who hadn't previously thought about or who had been against it)

then the overall donor pool grows and there are more organs to go around,

including to the people next on the list. But if the directed donation was

from someone who would have donated anyway then it is hard not to see how

the liver was taken away from the person at the top of this list.

While the ingenuity and audacity of the family is perhaps worthy of some

admiration, I can't ignore that they are using money (in the form of

billboards) to jump the queue and to excuse themselves from the rules that

govern the rest of us -- rules, though not perfect, that exist for the

best outcomes for the greatest number of people

> How do you guys feel about this????

> Personally it makes me really upset!

-----------

Think you're an ORGAN DONOR? Click here to find out:

http://www.shareyourlife.org/become.asp

[Guest guest]

Being so new to this, there certainly are a lot of " issues " that I haven't

thought about. The billboard -- when I first saw it I thought it was a great

idea, like Barb, I was thinking like a Mom - a do whatever it takes attitude. I

do think though that it probably has had a domino effect, a raised awareness

etc. To me the question is - did someone not get a liver because this man did

(did someone get bumped because of media attention). It has raised a question

for me - is there such a thing as a " targeted " donation. I haven't thought of

this much so I am not sure I can really explain what I mean. For example - as a

potential donor could I stipulate that if (God forbid) my liver was available to

donate that Mom's on the list get first priority? Not that I am considering

doing that ... I just wondered if it ever happens.

I didn't realize until this group that there was such a thing as a live donor

for PSC, I know of course that is a completely different scenerio.

LINDA

[Guest guest]

aisenhar wrote:

> How do you guys feel about this????

I guess I don't mind it that much as long as it's a pretty limited

phenomenon. It could end up being a way for wealthy people, who have

lots of money for advertising/publicity etc. to essentially " buy "

themselves a liver. If that started happening very often, they'd

probably have to scrap the whole directed donation option.

So, while I don't have a major problem with this specific incident, and

I certainly can sympathize with the family of the guy who did it, I can

see definite potential for abuse. I certainly don't want to have to

start raising funds for an advertising campaign in order to get a fair

shot at a liver myself when I need one!

athan

[Guest guest]

Mercy,

If it gets recognition for transplant surgery and the necessity of donors

then I am all for it. It show a great deal of ingenuity. I hope it will

make other people aware of the need for this type of medical procedure.

Mr. Itch (Rob)

________________________________________________________________

The best thing to hit the Internet in years - Juno SpeedBand!

Surf the Web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

,

I have to chime in here. If you want a dilemma here's one. I personally know of three individuals (one of whom is a convicted murderer) who received liver transplants after having spent a lifetime destroying their livers with drugs and alcohol. This, mind you is not an uncommon reason for needing a new liver. Many drug addicts end up with Hep C etc. How is it that these folks end up with new livers when others, who through no fault of their own (people like you and me) die on the list or develop cancer before we can get a liver. I personally think the current system sucks. I believe that those who because of their own self abuse find themselves in need of a new liver should stand in line behind those who are in need through no fault of their own.

From: llduq@... Sent: Saturday, August 14, 2004 12:56 PMTo: Subject: Re: Re: Article:Man gets liver after using billboards, Net

Being so new to this, there certainly are a lot of "issues" that I haven't thought about. The billboard -- when I first saw it I thought it was a great idea, like Barb, I was thinking like a Mom - a do whatever it takes attitude. I do think though that it probably has had a domino effect, a raised awareness etc. To me the question is - did someone not get a liver because this man did (did someone get bumped because of media attention). It has raised a question for me - is there such a thing as a "targeted" donation. I haven't thought of this much so I am not sure I can really explain what I mean. For example - as a potential donor could I stipulate that if (God forbid) my liver was available to donate that Mom's on the list get first priority? Not that I am considering doing that ... I just wondered if it ever happens.I didn't realize until this group that there was such a thing as a live donor for PSC, I know of course that is a completely different scenerio.LINDA

[Guest guest]

The type of cancer this man suffers from is an indication for liver transplant. Your Gal Bladder cancer may a contraindication for a transplant as I believe it is very similar to bile duct cancer.

From: aisenhar Sent: Saturday, August 14, 2004 4:59 AMTo: Subject: Re: Article:Man gets liver after using billboards, Net

How do you guys feel about this????Personally it makes me really upset! I am not currently waiting for a liver, but I know many of you are. I really would have liked the liver to go to the next person on the list. I do not want to see organs going to the most advertised candidates. I am also very jealous that he was able to receive a liver even though he was suffering from cancer. I have been told that because I had gall bladder cancer the odds of finding a doctor to consider a transplant are almost none.What do you think?

[Guest guest]

You are correct that a person with an ongoing alcohol or drug problem would not be eligible for a new liver. However as we saw recently with Pat Summerall recovered addicts are eligible. So I go back to my previous statement that here we all are waiting behind "former" addicts who chose to destroy their body but as long as they are recovered are often seen as more urgent recipients. We all know that we PSC patients look "great" even though a disease is ravaging our livers and with the miracle of Actigal which clearly lowers our liver panel numbers without (it seems) any other positive effects getting a transplant is a challenge. I am sorry if this is disturbing to anyone in the group be it makes me a little angry to think that my brother (who is listed) or myself (if and when the time comes) may not get a liver because someone else who chose to destroy their own liver is at the top of the list.

From: LLduq Sent: Monday, August 16, 2004 8:45 PMTo: Subject: Re: Re: Article:Man gets liver after using billboards, Net

Mark,

This is going to be a bit off the subject, but your post struck a nerve with me. A nerve that I have been trying to understand, and I think I finally understand it. Thanks.

When Suzanne (15) got dx I felt many things; one of the things I felt (and maybe even continue to feel) is anger towards Suzanne's father - he is an active alcoholic. I have been angry that Suzanne got this disease, for reasons unknown, but certainly not because of choices she has made in her life. And here is this man - her father - well aware of her disease and the potential difficulties that she may be facing because of the disease, continuing to harm his own liver - by choice. What if he was a potential donor and couldn't because of his drinking? Mark, your post added to my what ifs --- what if someday he takes a liver from someone else - even from her . . . I wasn't sure if my "anger" was left over anger from the hurt that an active alcoholic brings to the people that care about them, or if there was some reason for the resurgence of that anger - I think I have new insights now.

Am I wrong though in assuming that they would not give an active alcoholic a liver? (It feels absurd even asking that question because I have no idea really who "they" is - but it may be getting too philosophical for me this late at night!).

Anyway - I have found this to be such an interesting and enlightening discussion - thank you all. I do apologize if this post is sharing more than is appropriate for this group.

LINDA

RE: Re: Article:Man gets liver after using billboards, Net

,

I have to chime in here. If you want a dilemma here's one. I personally know of three individuals (one of whom is a convicted murderer) who received liver transplants after having spent a lifetime destroying their livers with drugs and alcohol. This, mind you is not an uncommon reason for needing a new liver. Many drug addicts end up with Hep C etc. How is it that these folks end up with new livers when others, who through no fault of their own (people like you and me) die on the list or develop cancer before we can get a liver. I personally think the current system sucks. I believe that those who because of their own self abuse find themselves in need of a new liver should stand in line behind those who are in need through no fault of their own.