Final comments on the st. louis post dispatch living donor series

[Guest guest]

First of all, sorry I didn't respond to the comments on my previous

posts about this... I've been kind of sick (nausea, vomiting, fatigue

etc.) for the last few days, and just finally got back to the computer

again. Now I'm trying to catch up on everything (and still not feeling

100%) so I'm not sure if I'll have time to write a letter to the editor.

After reading the last couple articles in the series, I did see a couple

positives (information about becoming an organ donor, and some

reasonable suggestions as to how to insure that living donation is safe)

but on the whole I was very disappointed. I especially took umbrage

with the implication in the final article that since most of the

diseases that necessitate transplantation are preventable, the people

who are sick (and who got themselves into the situation in the first

place) shouldn't risk other peoples health. No, they didn't say it in

those words... what they said was that " In the long run, the best hope

for reducing waiting lists lies in prevention. " And then listed Hep. C

and other " preventable " diseases as the main reasons for transplant. But

while prevention is great, the idea that prevention is going to change

things at any time in the near future just shows the authors lack of

understanding of the issues.

The message throughout was " be careful of these people " . The repeated

use of the phrase " desperate for a transplant " and similar wordings made

it look like all of us who are listed are willing to do just about

anything to get someone to donate an organ to us, and in the final

article it was explicitly suggested that doctors are pursuing living

donor transplants simply to earn more money for the hospitals. We, of

course, know that most of us are very hesitant even to ask people to

donate (my own feeling is that I'd never ask, but if the circumstances

were right and someone volunteered I'd consider accepting their offer...

if something went wrong I couldn't live with the feeling that I'd

pressured someone into donating), and that most of the transplant

centers already have very comprehensive guidelines and safeguards in

place to keep the donors and recipients informed and safe.

In the end, the articles kept pointing to the lack of data to show that

donation is safe, but the fact is that there's no evidence to support

the idea that it's more dangerous, or that donors receive poorer care

than any other person going similar surgical procedures. In fact the

evidence that's actually out there (and, in spite of their repeated

assertions that the risks are totally unknown, there have been a number

of studies on the incidence of complications etc. in living donors)

shows that the overwhelming majority of donors recover fully (even

though a significant percentage have some minor complications).

So my final analysis is that the basic subject of the articles was a

worthwhile one, but they were so biased, one-sided, and sensationalized

that they ultimately are of little use and may do more harm than good.

That's my $.02! I'll try to post something to the online forum at the

newspaper website if I get a chance, but probably comments from others

who have more direct experience with living donor transplant would be

more effective...

athan

[Guest guest]

>>>>>I especially took umbrage

with the implication in the final article that since most of the

diseases that necessitate transplantation are preventable, the people

who are sick (and who got themselves into the situation in the first

place) shouldn't risk other peoples health.>>>>

Just to clarify, this was in the EDITORIAL, and labeled as opinion.

And, this is the complete excerpt:

" In the long run, the best hope for reducing waiting lists lies in

prevention. Diabetes and high blood pressure, often caused by

obesity, are among the leading causes of kidney failure. Hepatitis

C, often caused by illegal drug use or dirty tattoo needles, is now

the leading cause of liver transplants.

" But as long as desperately ill people need organs and living donors

step forward to help, there must be strict rules and scrupulous

record-keeping to protect those on both sides of the transaction. "

Pam (mom to Quantell, 15, dx 1996, tx 2001)

[Guest guest]

When my son was 11 in was diagnosed with PSC. I had a woman tell me if he wasn't an alcoholic he wouldn't need a transplant!!!

Martiamnce wrote:

>>>>>I especially took umbragewith the implication in the final article that since most of thediseases that necessitate transplantation are preventable, the peoplewho are sick (and who got themselves into the situation in the firstplace) shouldn't risk other peoples health.>>>>Just to clarify, this was in the EDITORIAL, and labeled as opinion.And, this is the complete excerpt:"In the long run, the best hope for reducing waiting lists lies in prevention. Diabetes and high blood pressure, often caused by obesity, are among the leading causes of kidney failure. Hepatitis C, often caused by illegal drug use or dirty tattoo needles, is now the leading cause of liver transplants. "But as long as desperately ill people need organs and living donors step forward to help, there must be strict rules

and scrupulous record-keeping to protect those on both sides of the transaction." Pam (mom to Quantell, 15, dx 1996, tx 2001)__________________________________________________

[Guest guest]

amnce wrote:

> >>>>>I especially took umbrage

> with the implication in the final article that since most of the

> diseases that necessitate transplantation are preventable, the people

> who are sick (and who got themselves into the situation in the first

> place) shouldn't risk other peoples health.>>>>

>

> Just to clarify, this was in the EDITORIAL, and labeled as opinion.

>

That's why I said it was an implication, and that it wasn't stated

straight out. I do think that my characterization of the attitude

behind the statement (especially given the general tone of all the other

articles) was at least reasonable. Overall I do agree with their call

for better regulation, follow-up and recordkeeping--I just think that

they did a poor and unbalanced job of reaching those conclusions. I

also think that it would have been much better if they could have

pointed to some of the work that is already being done to address these

concerns (and there is plenty). It would actually have strengthened

their ultimate argument by showing that there are other people who are

concerned about the same thing. Of course then they wouldn't look like

knights in shining armor charging in and exposing the evils of the

transplant industry!

Anyhow, thanks for the discussion! It's interesting to see other

peoples reactions to things like this... I hope I haven't bothered

anyone with my comments. I certainly didn't intend to!

athan

[Guest guest]

athan wrote:

> I

> also think that it would have been much better if they could have

> pointed to some of the work that is already being done to address these

> concerns (and there is plenty).

I just noticed that there *was* an article done on this subject (I

thought I had read them all, but I guess I managed to miss this one).

It does help to balance the picture up a bit, but still doesn't talk

much about the *specific* things that transplant centers are doing on

their own initiative to make sure donors are informed of the risks and

receive good care and followup. And yet again it fails to bring in any

cases where things were done right... where donors and recipients were

treated well and recovered fully. All the actual people who are

mentioned are those who had problems. I did notice that they had

printed a few letters on the series, and most of them were either

telling positive stories about living donation, or pointing to the need

for more people to sign their donor cards. So at least the word is

getting out in that way!

And I think that really is my last word on this subject! I gotta get to

bed! Good night all :-)

athan

[Guest guest]

I

> also think that it would have been much better if they could have

> pointed to some of the work that is already being done to address

these

> concerns (and there is plenty).

They did.

There's a grouping of articles under " Outside Resources " and

additional info under " Multimedia. "

Plus, several of the main articles addressed individual iniatives

prompted by family members and/or institutions.

I still think this was a comprehensive, well-researched, well-

reported series. I'll predict now that it will win one or more major

journalism rewards.

I found the " Law and Order " implication that the morgue will sell

your body parts more distressing. Of course the focus there was

kidneys, so we think it's fine, while the kidney lists are mounting

letter campaigns.

It's hard to be objective when we're so close to an issue.

Pam

(mom to Quantell, 15, dx 1996, tx 2001)

[Guest guest]

amnce wrote:

> I found the " Law and Order " implication that the morgue will sell

> your body parts more distressing. Of course the focus there was

> kidneys, so we think it's fine, while the kidney lists are mounting

> letter campaigns.

I personally don't think it's fine. I didn't comment on it myself

because I didn't see the show in question, and also because I've seen so

many misrepresentations of the organ transplant situation from the

entertainment industry that I'm tired of hashing through it all again

(organs from a body in a morgue wouldn't be viable anyway, etc. etc. etc.)

athan

[Guest guest]

<Big Sigh> It was this reason that Lori did not go " public " with her

disease for a long time. Many people hear liver disease and think

alcoholism.

Also, we've met several people who have Hepatitis C. None of them are

drug users or have tattoos.

Naperville, IL

> When my son was 11 in was diagnosed with PSC. I had a woman tell me

if he wasn't an alcoholic he wouldn't need a transplant!!!

> Marti

>

[Guest guest]

When Lonnie and I went to his family 4 1/2 years ago with the decision

we had made to have a full colon removal, he grandfather (of all

people) piped up immediately and said, " Well, if you hadn't been

drinking as much as you did, you wouldn't be in this situation, now,

would you? " It hurt Lonnie very bad, but we knew it was the

Alzheimers talking. Lonnie's uncle, his grandfather's son, WAS the

drinker and eventually died of breast cancer 5 years ago.

Kathy

wife of Lonnie

ltx 6/04

Many people hear liver disease and think alcoholism.

>