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Good morning Pierre,

I went to the web site, and I have to say that I agree too. Of course I

feel for anyone who is waiting for a kidney, but you are right about not

following the proper channels everyone else has to.

In a message dated 3/24/2005 3:46:57 A.M. Pacific Standard Time,

pgl-groups@... writes:

I think the hospital is doing the right thing. This potential donor was

obtained through www.matchingdonors.com , and it's a similar case to the one

in the US a few months ago. At the time, for that one, it was claimed there

was no compensation, but this turned out to be false.

You can go to www.matchingdonors.com and see the guy's listing:

http://www.matchingdonors.com/life/Donor/search.cfm?page=position-description &

JobID=%24%22%2DHK2%40%20%20%0A & CFID=3115743 & CFTOKEN=92182261

If the link doesn't work, just go to the site. www.matchingdonors.com ,

choose Canada in the search box (leave the rest empty), and Baruch Tegegne

is the first person who comes up. That's the guy needing the kidney. He's

only been on the waiting list for a couple of years. I don't see why he

should get a kidney ahead of anyone else. I've been waiting 2 and half

years, and many people I know have been waiting much longer. If someone in

India desperately wants to give a kidney to a stranger in Canada out of the

goodness of his heart, then let him give it to the next person on the

waiting list who matches (this is called altruistic anonymous donation). Or

better yet, why doesn't he donate his kidney to one of the thousands of

people waiting for a kidney in India? You can see how any transplant centre

would view this as suspicious. In Canada, to be a live kidney donor, you

have to either be a relative or you have to be able to demonstrate a

longstanding relationship as a friend with the intended recipient. This is

to prevent secret, under-the-table buying and selling of organs, and I

personally think it's the right thing. In addition to all the above, this

man wants the Canadian taxpayer to pay for installing his illegally-obtained

kidney.

I encourage you to go and read that matchingdonors.com listing. I could come

up with a pretty compelling ad too, if I wanted. Anyone on dialysis could.

Pierre

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Guest guest

Thanks Pierre,

I'm all quite new to all the ethical issues regarding live organ

donations. I appreciate all the insight that you have given me

regarding this. Instictively, I felt the hospital was in the right,

but got kinda confused of course because my husband offered to

donate his kidney to me.

Sophia

> I think the hospital is doing the right thing. This potential

donor was

> obtained through www.matchingdonors.com , and it's a similar case

to the one

> in the US a few months ago. At the time, for that one, it was

claimed there

> was no compensation, but this turned out to be false.

>

> You can go to www.matchingdonors.com and see the guy's listing:

>

> http://www.matchingdonors.com/life/Donor/search.cfm?page=position-

description & JobID=%24%22%2DHK2%40%20%20%

0A & CFID=3115743 & CFTOKEN=92182261

>

> If the link doesn't work, just go to the site.

www.matchingdonors.com ,

> choose Canada in the search box (leave the rest empty), and Baruch

Tegegne

> is the first person who comes up. That's the guy needing the

kidney. He's

> only been on the waiting list for a couple of years. I don't see

why he

> should get a kidney ahead of anyone else. I've been waiting 2 and

half

> years, and many people I know have been waiting much longer. If

someone in

> India desperately wants to give a kidney to a stranger in Canada

out of the

> goodness of his heart, then let him give it to the next person on

the

> waiting list who matches (this is called altruistic anonymous

donation). Or

> better yet, why doesn't he donate his kidney to one of the

thousands of

> people waiting for a kidney in India? You can see how any

transplant centre

> would view this as suspicious. In Canada, to be a live kidney

donor, you

> have to either be a relative or you have to be able to demonstrate

a

> longstanding relationship as a friend with the intended recipient.

This is

> to prevent secret, under-the-table buying and selling of organs,

and I

> personally think it's the right thing. In addition to all the

above, this

> man wants the Canadian taxpayer to pay for installing his

illegally-obtained

> kidney.

>

> I encourage you to go and read that matchingdonors.com listing. I

could come

> up with a pretty compelling ad too, if I wanted. Anyone on

dialysis could.

>

> Pierre

>

>

>

>

> kidney patient sues hospital over kidney transplant

>

>

> >

> >

> > Hi everyone,

> >

> > I've been pretty busy these days, but I noticed this news article

> > yesterday or the day before, regarding a kidney patient who

found a

> > donor in India, but the hospital refused treatment since it

couldn't

> > determine that the donor was not selling his kidney.

> >

> > Last night on the news on TV, they apparently interviewed the guy

> > from India who wanted to donate. And apparently, he only wants

lost

> > wages and travel expenses when donating his kidney.

> >

> > I find that it is kind of interesting that the kidney patient is

> > suing on the basis of a " right to life and medical assistance

under

> > the Canada Health Act " .

> >

> > It also got me wondering: assuming this is truly a donation,

save

> > for reimbursement for lost wages and travel expenses, is it

really

> > all that different from me asking a friend (or my husband or one

of

> > my relatives) to donate a kidney for me?

> >

> > What do you think?

> >

> > Sophia

> >

> > http://www.cbc.ca/story/science/national/2005/03/22/kidney-

> > lawsuit050322.html

> >

> >

> >

> >

> >

> >

> > To edit your settings for the group, go to our Yahoo Group

> > home page:

> > http://groups.yahoo.com/group/iga-nephropathy/

> >

> > To unsubcribe via email,

> > iga-nephropathy-unsubscribe

> > Visit our companion website at www.igan.ca. The site is entirely

supported

> by donations. If you would like to help, go to:

> > http://www.igan.ca/id62.htm

> >

> > Thank you

> >

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Guest guest

Thanks Pierre,

I'm all quite new to all the ethical issues regarding live organ

donations. I appreciate all the insight that you have given me

regarding this. Instictively, I felt the hospital was in the right,

but got kinda confused of course because my husband offered to

donate his kidney to me.

Sophia

> I think the hospital is doing the right thing. This potential

donor was

> obtained through www.matchingdonors.com , and it's a similar case

to the one

> in the US a few months ago. At the time, for that one, it was

claimed there

> was no compensation, but this turned out to be false.

>

> You can go to www.matchingdonors.com and see the guy's listing:

>

> http://www.matchingdonors.com/life/Donor/search.cfm?page=position-

description & JobID=%24%22%2DHK2%40%20%20%

0A & CFID=3115743 & CFTOKEN=92182261

>

> If the link doesn't work, just go to the site.

www.matchingdonors.com ,

> choose Canada in the search box (leave the rest empty), and Baruch

Tegegne

> is the first person who comes up. That's the guy needing the

kidney. He's

> only been on the waiting list for a couple of years. I don't see

why he

> should get a kidney ahead of anyone else. I've been waiting 2 and

half

> years, and many people I know have been waiting much longer. If

someone in

> India desperately wants to give a kidney to a stranger in Canada

out of the

> goodness of his heart, then let him give it to the next person on

the

> waiting list who matches (this is called altruistic anonymous

donation). Or

> better yet, why doesn't he donate his kidney to one of the

thousands of

> people waiting for a kidney in India? You can see how any

transplant centre

> would view this as suspicious. In Canada, to be a live kidney

donor, you

> have to either be a relative or you have to be able to demonstrate

a

> longstanding relationship as a friend with the intended recipient.

This is

> to prevent secret, under-the-table buying and selling of organs,

and I

> personally think it's the right thing. In addition to all the

above, this

> man wants the Canadian taxpayer to pay for installing his

illegally-obtained

> kidney.

>

> I encourage you to go and read that matchingdonors.com listing. I

could come

> up with a pretty compelling ad too, if I wanted. Anyone on

dialysis could.

>

> Pierre

>

>

>

>

> kidney patient sues hospital over kidney transplant

>

>

> >

> >

> > Hi everyone,

> >

> > I've been pretty busy these days, but I noticed this news article

> > yesterday or the day before, regarding a kidney patient who

found a

> > donor in India, but the hospital refused treatment since it

couldn't

> > determine that the donor was not selling his kidney.

> >

> > Last night on the news on TV, they apparently interviewed the guy

> > from India who wanted to donate. And apparently, he only wants

lost

> > wages and travel expenses when donating his kidney.

> >

> > I find that it is kind of interesting that the kidney patient is

> > suing on the basis of a " right to life and medical assistance

under

> > the Canada Health Act " .

> >

> > It also got me wondering: assuming this is truly a donation,

save

> > for reimbursement for lost wages and travel expenses, is it

really

> > all that different from me asking a friend (or my husband or one

of

> > my relatives) to donate a kidney for me?

> >

> > What do you think?

> >

> > Sophia

> >

> > http://www.cbc.ca/story/science/national/2005/03/22/kidney-

> > lawsuit050322.html

> >

> >

> >

> >

> >

> >

> > To edit your settings for the group, go to our Yahoo Group

> > home page:

> > http://groups.yahoo.com/group/iga-nephropathy/

> >

> > To unsubcribe via email,

> > iga-nephropathy-unsubscribe

> > Visit our companion website at www.igan.ca. The site is entirely

supported

> by donations. If you would like to help, go to:

> > http://www.igan.ca/id62.htm

> >

> > Thank you

> >

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Share on other sites

Guest guest

Thanks Pierre,

I'm all quite new to all the ethical issues regarding live organ

donations. I appreciate all the insight that you have given me

regarding this. Instictively, I felt the hospital was in the right,

but got kinda confused of course because my husband offered to

donate his kidney to me.

Sophia

> I think the hospital is doing the right thing. This potential

donor was

> obtained through www.matchingdonors.com , and it's a similar case

to the one

> in the US a few months ago. At the time, for that one, it was

claimed there

> was no compensation, but this turned out to be false.

>

> You can go to www.matchingdonors.com and see the guy's listing:

>

> http://www.matchingdonors.com/life/Donor/search.cfm?page=position-

description & JobID=%24%22%2DHK2%40%20%20%

0A & CFID=3115743 & CFTOKEN=92182261

>

> If the link doesn't work, just go to the site.

www.matchingdonors.com ,

> choose Canada in the search box (leave the rest empty), and Baruch

Tegegne

> is the first person who comes up. That's the guy needing the

kidney. He's

> only been on the waiting list for a couple of years. I don't see

why he

> should get a kidney ahead of anyone else. I've been waiting 2 and

half

> years, and many people I know have been waiting much longer. If

someone in

> India desperately wants to give a kidney to a stranger in Canada

out of the

> goodness of his heart, then let him give it to the next person on

the

> waiting list who matches (this is called altruistic anonymous

donation). Or

> better yet, why doesn't he donate his kidney to one of the

thousands of

> people waiting for a kidney in India? You can see how any

transplant centre

> would view this as suspicious. In Canada, to be a live kidney

donor, you

> have to either be a relative or you have to be able to demonstrate

a

> longstanding relationship as a friend with the intended recipient.

This is

> to prevent secret, under-the-table buying and selling of organs,

and I

> personally think it's the right thing. In addition to all the

above, this

> man wants the Canadian taxpayer to pay for installing his

illegally-obtained

> kidney.

>

> I encourage you to go and read that matchingdonors.com listing. I

could come

> up with a pretty compelling ad too, if I wanted. Anyone on

dialysis could.

>

> Pierre

>

>

>

>

> kidney patient sues hospital over kidney transplant

>

>

> >

> >

> > Hi everyone,

> >

> > I've been pretty busy these days, but I noticed this news article

> > yesterday or the day before, regarding a kidney patient who

found a

> > donor in India, but the hospital refused treatment since it

couldn't

> > determine that the donor was not selling his kidney.

> >

> > Last night on the news on TV, they apparently interviewed the guy

> > from India who wanted to donate. And apparently, he only wants

lost

> > wages and travel expenses when donating his kidney.

> >

> > I find that it is kind of interesting that the kidney patient is

> > suing on the basis of a " right to life and medical assistance

under

> > the Canada Health Act " .

> >

> > It also got me wondering: assuming this is truly a donation,

save

> > for reimbursement for lost wages and travel expenses, is it

really

> > all that different from me asking a friend (or my husband or one

of

> > my relatives) to donate a kidney for me?

> >

> > What do you think?

> >

> > Sophia

> >

> > http://www.cbc.ca/story/science/national/2005/03/22/kidney-

> > lawsuit050322.html

> >

> >

> >

> >

> >

> >

> > To edit your settings for the group, go to our Yahoo Group

> > home page:

> > http://groups.yahoo.com/group/iga-nephropathy/

> >

> > To unsubcribe via email,

> > iga-nephropathy-unsubscribe

> > Visit our companion website at www.igan.ca. The site is entirely

supported

> by donations. If you would like to help, go to:

> > http://www.igan.ca/id62.htm

> >

> > Thank you

> >

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Share on other sites

Guest guest

Wow, this one gets complicated in a hurry.....

However, my first question is how does an organization prove a negative? In

other words, for living unrelated donors here in the USA, the psychological

interviews and queries are designed to determine if compensation is being

paid directly for the kidney (as opposed to reimbursement of expenses, lost

wages, and such). So I don't get the hospital refusing the procedure when

both parties asserted no cash, other than expenses, was changing hands.

Covering expenses for donation, such as lost wages, is a very common

practice, and of course the medical expenses are born by the Tx recipient's

insurance (be that private or Medicare or both).

If one can't find a decent match amongst family and friends, the option is

offered of having someone who desires to donate a kindey to the list, under

the theory that the " next, " cadaver kidney would then come to the person who

arranged the donation. In this case, though, it is hardly an even

trade.....one person gets a live donation and the other gets a cadaver

kidney, so I don't advocate this. Domino donation, in which TWO or more

unrelated donor:recipient pairs are arranged and transplanted at the same

time, are becoming more common.

I am in the position above...no compatible living donors are available. I

had a girlfriend who promised a kidney, but then we broke off our

relationship....and thus the offer was withdrawn. Two others offered as

well, but both are over 50 and are thus considered poor risks and are

ineligible.

The practice of selling kidneys is known to occur, and as macabre as it is,

if I had any confidence that such a thing could be done successfully, in

decent surroundings, etc. (and if I had sufficient coinage, which I don't)

despite the ethics of it all I would consider it. Probably wouldn't do it,

but would consider it.

The bottom line, though, is in the US at least we are facing literally a

dialysis crisis, for several reasons:

- Its largely paid for by the government, at more or less the same rates it

has been for many years

- Far more people (about 3x now) are expected to be dialyzing as the

boomers age and as the frequency of diabetes increases

- Only about 30 to 40% of families who face the misfortunate question of

donation agree to do so (in fact, I had a brother who died of a head injury

in 1975, and my Dad said no to him being a donor, even though the rest of

us, Mom included, wanted this done....a wasted death seemed senseless. I

begged my Dad to change his mind, but no dice. The irony of my current

situation is not lost upon me) And, as the number of folks on the list

rise, the wait time does, also. In addition, and this is a good thing in

one way and not in another, the supply of cadaver donors is decreasing in

proportion to the population (I attribute much of this to the almost

fanatical attention paid to safety...even kids on bicycles are wearing

helmets now). Good, obviously, but...

- due to the huge costs associated with dialysis I expect we will go back

to relative rationing of this type of care. In fact we already are....most

poeple in the US on in-center 3x/week hemo are underdialyzed, and believe it

not according to Medicare, some folks skip sessions, too. Judging by

Pierre's descriptions, megatons of STUFF get used during a dialysis session,

and I am sure this is true of PD as well.

- For all of the above reasons I think donation should be presumptive

rather than relying on the family. Even if I have an organ donor card in my

wallet....it is what my family says that counts....virtually no facility in

the US will perform organ harvests, no matter what documentation the person

has on him, if donation is contrary to the familial wishes as expressed at

the time. This makes the organ donation card situation a monumental farce,

unfortunately.

- As the lifetime of a cadaver kidney is on average more or less 10 years,

as I am 43, I will likely need more than one transplant. The era of 3 and 4

transplants per recipient are over in the US, as wait times on the list will

approach ten years and more because a) reciepients will be healthier and

live longer and B) more people will be on the list.

- Someone on this list, some time ago, suggested using criminals - those

subject to lethal injection - as donors. Completely aside from my thoughts

re the death penalty (barbaric, unnecessary, and more expensive than

lifetime incarceration) the drugs used destroy the organs (potassium

chloride, a curare deriative, and sodium thiopental - all in huge amounts).

- I have suggested to my own neph that I be allowed to do a different type

of swap....namely half a liver for a kidney. You should have seen the look

on her face....before she said this would be far too dangerous and she

wouldn't support the concept.

Having listed a lot of problems, here are a few solutions:

1. Make donation presumptive such that the individual must opt out of

donation and carry a card to that affect, and leave the family out of it -

not likely to happen in the US

2. Allow small (or large for that matter) payments to living kidney

donors - also not likely here in the US

3. Spend some real money on public education, etc. re organ donation. We

spend BILLIONS per year on dialysis...while a Tx and the meds after are very

expensive, studies show there is a positive NPV after about 3 years. I

don't know what we spend on donor education, but it isn't much and much of

that is doubtless private money.

4. Tighten the criteria for those who are eligible to become reciepients

(i.e. having comorbid conditions, etc.) - not likely here in the US,

either, we have an " anti-elitist " attitude in this country...and indeed the

trend is the other way

5. Loosen the criteria for donation, both living and cadaver - to some

degree this is already being done; for over 50 cadavers the TX team will

consider transplanting both kidneys into one recipient, as is done with

infant/young children cadaver donations. They are even allowing limited

HIV+ to HIV+ donor recipient combinations. Aside from ethical

considerations, I think it is a shame that this woman in Florida is being

allowed to starve to death....with a completely usable set of kidneys,

liver, etc. Typically we have restricted donors to living volunteers or

those who have died traumatically....its not clear that we extend this to

folks who die of stroke, heart attacks, etc. It takes HOURS for the kindeys

to become sufficiently ischemic as to be useless. Where medically possible,

organ donation should be the norm not the exception.

6. Loosen the criteria for organ swapping - ex my half liver for a kidney

idea. I intend to pursue this with great vigor.

7. Pursue methods for dialysis that more closely mimic genuine kidney

function - this is being pursued with vigor and largely consists of having

living kidney cells in the extracorporeal dialysis loop for hormonogenesis,

some kidney metabolic functions not related to waste removal, etc.

8. Pursue methods for dialysis that are more palatable to the client

population on a daily basis. The Aksys people seem to be doing this well...

I've written a huge post, but...these things are quite naturally on my mind.

Thoughts?

Bart

kidney patient sues hospital over kidney transplant

Hi everyone,

I've been pretty busy these days, but I noticed this news article

yesterday or the day before, regarding a kidney patient who found a

donor in India, but the hospital refused treatment since it couldn't

determine that the donor was not selling his kidney.

Last night on the news on TV, they apparently interviewed the guy

from India who wanted to donate. And apparently, he only wants lost

wages and travel expenses when donating his kidney.

I find that it is kind of interesting that the kidney patient is

suing on the basis of a " right to life and medical assistance under

the Canada Health Act " .

It also got me wondering: assuming this is truly a donation, save

for reimbursement for lost wages and travel expenses, is it really

all that different from me asking a friend (or my husband or one of

my relatives) to donate a kidney for me?

What do you think?

Sophia

http://www.cbc.ca/story/science/national/2005/03/22/kidney-

lawsuit050322.html

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

Link to comment
Share on other sites

Guest guest

Wow, this one gets complicated in a hurry.....

However, my first question is how does an organization prove a negative? In

other words, for living unrelated donors here in the USA, the psychological

interviews and queries are designed to determine if compensation is being

paid directly for the kidney (as opposed to reimbursement of expenses, lost

wages, and such). So I don't get the hospital refusing the procedure when

both parties asserted no cash, other than expenses, was changing hands.

Covering expenses for donation, such as lost wages, is a very common

practice, and of course the medical expenses are born by the Tx recipient's

insurance (be that private or Medicare or both).

If one can't find a decent match amongst family and friends, the option is

offered of having someone who desires to donate a kindey to the list, under

the theory that the " next, " cadaver kidney would then come to the person who

arranged the donation. In this case, though, it is hardly an even

trade.....one person gets a live donation and the other gets a cadaver

kidney, so I don't advocate this. Domino donation, in which TWO or more

unrelated donor:recipient pairs are arranged and transplanted at the same

time, are becoming more common.

I am in the position above...no compatible living donors are available. I

had a girlfriend who promised a kidney, but then we broke off our

relationship....and thus the offer was withdrawn. Two others offered as

well, but both are over 50 and are thus considered poor risks and are

ineligible.

The practice of selling kidneys is known to occur, and as macabre as it is,

if I had any confidence that such a thing could be done successfully, in

decent surroundings, etc. (and if I had sufficient coinage, which I don't)

despite the ethics of it all I would consider it. Probably wouldn't do it,

but would consider it.

The bottom line, though, is in the US at least we are facing literally a

dialysis crisis, for several reasons:

- Its largely paid for by the government, at more or less the same rates it

has been for many years

- Far more people (about 3x now) are expected to be dialyzing as the

boomers age and as the frequency of diabetes increases

- Only about 30 to 40% of families who face the misfortunate question of

donation agree to do so (in fact, I had a brother who died of a head injury

in 1975, and my Dad said no to him being a donor, even though the rest of

us, Mom included, wanted this done....a wasted death seemed senseless. I

begged my Dad to change his mind, but no dice. The irony of my current

situation is not lost upon me) And, as the number of folks on the list

rise, the wait time does, also. In addition, and this is a good thing in

one way and not in another, the supply of cadaver donors is decreasing in

proportion to the population (I attribute much of this to the almost

fanatical attention paid to safety...even kids on bicycles are wearing

helmets now). Good, obviously, but...

- due to the huge costs associated with dialysis I expect we will go back

to relative rationing of this type of care. In fact we already are....most

poeple in the US on in-center 3x/week hemo are underdialyzed, and believe it

not according to Medicare, some folks skip sessions, too. Judging by

Pierre's descriptions, megatons of STUFF get used during a dialysis session,

and I am sure this is true of PD as well.

- For all of the above reasons I think donation should be presumptive

rather than relying on the family. Even if I have an organ donor card in my

wallet....it is what my family says that counts....virtually no facility in

the US will perform organ harvests, no matter what documentation the person

has on him, if donation is contrary to the familial wishes as expressed at

the time. This makes the organ donation card situation a monumental farce,

unfortunately.

- As the lifetime of a cadaver kidney is on average more or less 10 years,

as I am 43, I will likely need more than one transplant. The era of 3 and 4

transplants per recipient are over in the US, as wait times on the list will

approach ten years and more because a) reciepients will be healthier and

live longer and B) more people will be on the list.

- Someone on this list, some time ago, suggested using criminals - those

subject to lethal injection - as donors. Completely aside from my thoughts

re the death penalty (barbaric, unnecessary, and more expensive than

lifetime incarceration) the drugs used destroy the organs (potassium

chloride, a curare deriative, and sodium thiopental - all in huge amounts).

- I have suggested to my own neph that I be allowed to do a different type

of swap....namely half a liver for a kidney. You should have seen the look

on her face....before she said this would be far too dangerous and she

wouldn't support the concept.

Having listed a lot of problems, here are a few solutions:

1. Make donation presumptive such that the individual must opt out of

donation and carry a card to that affect, and leave the family out of it -

not likely to happen in the US

2. Allow small (or large for that matter) payments to living kidney

donors - also not likely here in the US

3. Spend some real money on public education, etc. re organ donation. We

spend BILLIONS per year on dialysis...while a Tx and the meds after are very

expensive, studies show there is a positive NPV after about 3 years. I

don't know what we spend on donor education, but it isn't much and much of

that is doubtless private money.

4. Tighten the criteria for those who are eligible to become reciepients

(i.e. having comorbid conditions, etc.) - not likely here in the US,

either, we have an " anti-elitist " attitude in this country...and indeed the

trend is the other way

5. Loosen the criteria for donation, both living and cadaver - to some

degree this is already being done; for over 50 cadavers the TX team will

consider transplanting both kidneys into one recipient, as is done with

infant/young children cadaver donations. They are even allowing limited

HIV+ to HIV+ donor recipient combinations. Aside from ethical

considerations, I think it is a shame that this woman in Florida is being

allowed to starve to death....with a completely usable set of kidneys,

liver, etc. Typically we have restricted donors to living volunteers or

those who have died traumatically....its not clear that we extend this to

folks who die of stroke, heart attacks, etc. It takes HOURS for the kindeys

to become sufficiently ischemic as to be useless. Where medically possible,

organ donation should be the norm not the exception.

6. Loosen the criteria for organ swapping - ex my half liver for a kidney

idea. I intend to pursue this with great vigor.

7. Pursue methods for dialysis that more closely mimic genuine kidney

function - this is being pursued with vigor and largely consists of having

living kidney cells in the extracorporeal dialysis loop for hormonogenesis,

some kidney metabolic functions not related to waste removal, etc.

8. Pursue methods for dialysis that are more palatable to the client

population on a daily basis. The Aksys people seem to be doing this well...

I've written a huge post, but...these things are quite naturally on my mind.

Thoughts?

Bart

kidney patient sues hospital over kidney transplant

Hi everyone,

I've been pretty busy these days, but I noticed this news article

yesterday or the day before, regarding a kidney patient who found a

donor in India, but the hospital refused treatment since it couldn't

determine that the donor was not selling his kidney.

Last night on the news on TV, they apparently interviewed the guy

from India who wanted to donate. And apparently, he only wants lost

wages and travel expenses when donating his kidney.

I find that it is kind of interesting that the kidney patient is

suing on the basis of a " right to life and medical assistance under

the Canada Health Act " .

It also got me wondering: assuming this is truly a donation, save

for reimbursement for lost wages and travel expenses, is it really

all that different from me asking a friend (or my husband or one of

my relatives) to donate a kidney for me?

What do you think?

Sophia

http://www.cbc.ca/story/science/national/2005/03/22/kidney-

lawsuit050322.html

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

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Share on other sites

Guest guest

Wow, this one gets complicated in a hurry.....

However, my first question is how does an organization prove a negative? In

other words, for living unrelated donors here in the USA, the psychological

interviews and queries are designed to determine if compensation is being

paid directly for the kidney (as opposed to reimbursement of expenses, lost

wages, and such). So I don't get the hospital refusing the procedure when

both parties asserted no cash, other than expenses, was changing hands.

Covering expenses for donation, such as lost wages, is a very common

practice, and of course the medical expenses are born by the Tx recipient's

insurance (be that private or Medicare or both).

If one can't find a decent match amongst family and friends, the option is

offered of having someone who desires to donate a kindey to the list, under

the theory that the " next, " cadaver kidney would then come to the person who

arranged the donation. In this case, though, it is hardly an even

trade.....one person gets a live donation and the other gets a cadaver

kidney, so I don't advocate this. Domino donation, in which TWO or more

unrelated donor:recipient pairs are arranged and transplanted at the same

time, are becoming more common.

I am in the position above...no compatible living donors are available. I

had a girlfriend who promised a kidney, but then we broke off our

relationship....and thus the offer was withdrawn. Two others offered as

well, but both are over 50 and are thus considered poor risks and are

ineligible.

The practice of selling kidneys is known to occur, and as macabre as it is,

if I had any confidence that such a thing could be done successfully, in

decent surroundings, etc. (and if I had sufficient coinage, which I don't)

despite the ethics of it all I would consider it. Probably wouldn't do it,

but would consider it.

The bottom line, though, is in the US at least we are facing literally a

dialysis crisis, for several reasons:

- Its largely paid for by the government, at more or less the same rates it

has been for many years

- Far more people (about 3x now) are expected to be dialyzing as the

boomers age and as the frequency of diabetes increases

- Only about 30 to 40% of families who face the misfortunate question of

donation agree to do so (in fact, I had a brother who died of a head injury

in 1975, and my Dad said no to him being a donor, even though the rest of

us, Mom included, wanted this done....a wasted death seemed senseless. I

begged my Dad to change his mind, but no dice. The irony of my current

situation is not lost upon me) And, as the number of folks on the list

rise, the wait time does, also. In addition, and this is a good thing in

one way and not in another, the supply of cadaver donors is decreasing in

proportion to the population (I attribute much of this to the almost

fanatical attention paid to safety...even kids on bicycles are wearing

helmets now). Good, obviously, but...

- due to the huge costs associated with dialysis I expect we will go back

to relative rationing of this type of care. In fact we already are....most

poeple in the US on in-center 3x/week hemo are underdialyzed, and believe it

not according to Medicare, some folks skip sessions, too. Judging by

Pierre's descriptions, megatons of STUFF get used during a dialysis session,

and I am sure this is true of PD as well.

- For all of the above reasons I think donation should be presumptive

rather than relying on the family. Even if I have an organ donor card in my

wallet....it is what my family says that counts....virtually no facility in

the US will perform organ harvests, no matter what documentation the person

has on him, if donation is contrary to the familial wishes as expressed at

the time. This makes the organ donation card situation a monumental farce,

unfortunately.

- As the lifetime of a cadaver kidney is on average more or less 10 years,

as I am 43, I will likely need more than one transplant. The era of 3 and 4

transplants per recipient are over in the US, as wait times on the list will

approach ten years and more because a) reciepients will be healthier and

live longer and B) more people will be on the list.

- Someone on this list, some time ago, suggested using criminals - those

subject to lethal injection - as donors. Completely aside from my thoughts

re the death penalty (barbaric, unnecessary, and more expensive than

lifetime incarceration) the drugs used destroy the organs (potassium

chloride, a curare deriative, and sodium thiopental - all in huge amounts).

- I have suggested to my own neph that I be allowed to do a different type

of swap....namely half a liver for a kidney. You should have seen the look

on her face....before she said this would be far too dangerous and she

wouldn't support the concept.

Having listed a lot of problems, here are a few solutions:

1. Make donation presumptive such that the individual must opt out of

donation and carry a card to that affect, and leave the family out of it -

not likely to happen in the US

2. Allow small (or large for that matter) payments to living kidney

donors - also not likely here in the US

3. Spend some real money on public education, etc. re organ donation. We

spend BILLIONS per year on dialysis...while a Tx and the meds after are very

expensive, studies show there is a positive NPV after about 3 years. I

don't know what we spend on donor education, but it isn't much and much of

that is doubtless private money.

4. Tighten the criteria for those who are eligible to become reciepients

(i.e. having comorbid conditions, etc.) - not likely here in the US,

either, we have an " anti-elitist " attitude in this country...and indeed the

trend is the other way

5. Loosen the criteria for donation, both living and cadaver - to some

degree this is already being done; for over 50 cadavers the TX team will

consider transplanting both kidneys into one recipient, as is done with

infant/young children cadaver donations. They are even allowing limited

HIV+ to HIV+ donor recipient combinations. Aside from ethical

considerations, I think it is a shame that this woman in Florida is being

allowed to starve to death....with a completely usable set of kidneys,

liver, etc. Typically we have restricted donors to living volunteers or

those who have died traumatically....its not clear that we extend this to

folks who die of stroke, heart attacks, etc. It takes HOURS for the kindeys

to become sufficiently ischemic as to be useless. Where medically possible,

organ donation should be the norm not the exception.

6. Loosen the criteria for organ swapping - ex my half liver for a kidney

idea. I intend to pursue this with great vigor.

7. Pursue methods for dialysis that more closely mimic genuine kidney

function - this is being pursued with vigor and largely consists of having

living kidney cells in the extracorporeal dialysis loop for hormonogenesis,

some kidney metabolic functions not related to waste removal, etc.

8. Pursue methods for dialysis that are more palatable to the client

population on a daily basis. The Aksys people seem to be doing this well...

I've written a huge post, but...these things are quite naturally on my mind.

Thoughts?

Bart

kidney patient sues hospital over kidney transplant

Hi everyone,

I've been pretty busy these days, but I noticed this news article

yesterday or the day before, regarding a kidney patient who found a

donor in India, but the hospital refused treatment since it couldn't

determine that the donor was not selling his kidney.

Last night on the news on TV, they apparently interviewed the guy

from India who wanted to donate. And apparently, he only wants lost

wages and travel expenses when donating his kidney.

I find that it is kind of interesting that the kidney patient is

suing on the basis of a " right to life and medical assistance under

the Canada Health Act " .

It also got me wondering: assuming this is truly a donation, save

for reimbursement for lost wages and travel expenses, is it really

all that different from me asking a friend (or my husband or one of

my relatives) to donate a kidney for me?

What do you think?

Sophia

http://www.cbc.ca/story/science/national/2005/03/22/kidney-

lawsuit050322.html

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

Link to comment
Share on other sites

Guest guest

Pierre and Bart,

I think you do make good points with respect to #4. It is true that there is

selection that takes place now. I guess I was not looking at that perspective

when I wrote my first comment.

As obesity becomes a greater health threat, as in certainly now the case in the

US, prevalence of diabetes is sure to rise as well, and that coupled with the

aging of the baby boomers is sure to put more pressure on the dialysis and

transplantation needs.

Re: kidney patient sues hospital over kidney transplant

With respect to #4, if I understand what Bart is saying correctly, I think

this is already being done to a great extent, and has been since the

beginning of kidney transplants, at least regarding co-morbid conditions.

There are people who are suspended from the waiting list even for being

non-compliant with medications, treatments, etc., and there are many

co-morbid conditions that preclude a transplant.

I can't find statistics for it this morning, but I can tell you that in

Canada at least, the rate of family agreement to harvest organs when a

relative is declared brain or cardiac dead is way more than 30 to 40%. In

fact, in the transplant region I live in, the nation's capital region, the

rate is 95%. And yet people are still waiting years for a kidney. There just

aren't that many people dying under " suitable " conditions nowadays. Many

times, in accidents, the kidneys and other organs are too damaged to be

used.

The dialysis crisis in Canada and the U.S. is really a diabetes crisis.

Dialysis is merely a consequence of this. The proportion of people on

dialysis due to immunological kidney diseases like IgAN is actually pretty

small and it probably has not increased much over the years - there's no

explosion of dialysis need from us. Most people on dialysis are there

because of diabetes, and second, because of hypertension. There is also a

hypertension crisis, possibly due to the incredible amounts of salt on our

manufactured and our fast foods, and perhaps also our hurried, never-stop

lifestyles.

Right now, I'm about as poor as it is possible to be in my province without

being a homeless person. My monthly disability pension check is $20 more

than what I would get from welfare if I didn't have the pension. So, buying

a kidney just isn't in the cards for me, under any circumstances. I am

stating this as a disclaimer about my opinion, but, I think that any

solution which sets up a situation where the affluent are mining the poor

for organs is morally reprehensible. And for people who do this to expect th

at they must be cared for by our publicly-funded kidney healthcare systems

afterward is the height of selfish self-interest. One has to keep in mind

that a person with a kidney transplant needs almost as much continued

medical care as a person on dialysis, if not more - at least the first year

or two.

Pierre

Re: kidney patient sues hospital over kidney transplant

>

>

> >

> >

> > Hi Bart,

> >

> > You raise some very good points. I like your solutions with the

> exception

> > of #4. It would be very hard to say who does and does not get an

organ.

> > Although I agree in principle, it would be very hard to be told you

were

> one who

> > did not qualify for an organ.

> >

> > You did an excellent job of defining the problem and came up with some

> great

> > solutions. I really do wish we could go to an opt out organ donation.

> That

> > would really help.

> >

> >

> >

> > In a message dated 3/27/2005 12:32:02 P.M. Pacific Standard Time,

> > bkhphd@... writes:

> >

> >

> > Wow, this one gets complicated in a hurry.....

> >

> > However, my first question is how does an organization prove a

negative?

> In

> > other words, for living unrelated donors here in the USA, the

> psychological

> > interviews and queries are designed to determine if compensation is

being

> > paid directly for the kidney (as opposed to reimbursement of expenses,

> lost

> > wages, and such). So I don't get the hospital refusing the procedure

> when

> > both parties asserted no cash, other than expenses, was changing hands.

> > Covering expenses for donation, such as lost wages, is a very common

> > practice, and of course the medical expenses are born by the Tx

> recipient's

> > insurance (be that private or Medicare or both).

> >

> > If one can't find a decent match amongst family and friends, the option

> is

> > offered of having someone who desires to donate a kindey to the list,

> under

> > the theory that the " next, " cadaver kidney would then come to the

person

> who

> > arranged the donation. In this case, though, it is hardly an even

> > trade.....one person gets a live donation and the other gets a cadaver

> > kidney, so I don't advocate this. Domino donation, in which TWO or

more

> > unrelated donor:recipient pairs are arranged and transplanted at the

same

> > time, are becoming more common.

> >

> > I am in the position above...no compatible living donors are available.

> I

> > had a girlfriend who promised a kidney, but then we broke off our

> > relationship....and thus the offer was withdrawn. Two others offered

as

> > well, but both are over 50 and are thus considered poor risks and are

> > ineligible.

> >

> > The practice of selling kidneys is known to occur, and as macabre as it

> is,

> > if I had any confidence that such a thing could be done successfully,

in

> > decent surroundings, etc. (and if I had sufficient coinage, which I

> don't)

> > despite the ethics of it all I would consider it. Probably wouldn't do

> it,

> > but would consider it.

> >

> > The bottom line, though, is in the US at least we are facing literally

a

> > dialysis crisis, for several reasons:

> >

> > - Its largely paid for by the government, at more or less the same

rates

> it

> > has been for many years

> >

> > - Far more people (about 3x now) are expected to be dialyzing as the

> > boomers age and as the frequency of diabetes increases

> >

> > - Only about 30 to 40% of families who face the misfortunate question

of

> > donation agree to do so (in fact, I had a brother who died of a head

> injury

> > in 1975, and my Dad said no to him being a donor, even though the rest

of

> > us, Mom included, wanted this done....a wasted death seemed senseless.

I

> > begged my Dad to change his mind, but no dice. The irony of my current

> > situation is not lost upon me) And, as the number of folks on the list

> > rise, the wait time does, also. In addition, and this is a good thing

in

> > one way and not in another, the supply of cadaver donors is decreasing

in

> > proportion to the population (I attribute much of this to the almost

> > fanatical attention paid to safety...even kids on bicycles are wearing

> > helmets now). Good, obviously, but...

> >

> > - due to the huge costs associated with dialysis I expect we will go

back

> > to relative rationing of this type of care. In fact we already

> are....most

> > poeple in the US on in-center 3x/week hemo are underdialyzed, and

believe

> it

> > not according to Medicare, some folks skip sessions, too. Judging by

> > Pierre's descriptions, megatons of STUFF get used during a dialysis

> session,

> > and I am sure this is true of PD as well.

> >

> > - For all of the above reasons I think donation should be presumptive

> > rather than relying on the family. Even if I have an organ donor card

in

> my

> > wallet....it is what my family says that counts....virtually no

facility

> in

> > the US will perform organ harvests, no matter what documentation the

> person

> > has on him, if donation is contrary to the familial wishes as expressed

> at

> > the time. This makes the organ donation card situation a monumental

> farce,

> > unfortunately.

> >

> > - As the lifetime of a cadaver kidney is on average more or less 10

> years,

> > as I am 43, I will likely need more than one transplant. The era of 3

> and 4

> > transplants per recipient are over in the US, as wait times on the list

> will

> > approach ten years and more because a) reciepients will be healthier

and

> > live longer and B) more people will be on the list.

> >

> > - Someone on this list, some time ago, suggested using criminals -

those

> > subject to lethal injection - as donors. Completely aside from my

> thoughts

> > re the death penalty (barbaric, unnecessary, and more expensive than

> > lifetime incarceration) the drugs used destroy the organs (potassium

> > chloride, a curare deriative, and sodium thiopental - all in huge

> amounts).

> >

> > - I have suggested to my own neph that I be allowed to do a different

> type

> > of swap....namely half a liver for a kidney. You should have seen the

> look

> > on her face....before she said this would be far too dangerous and she

> > wouldn't support the concept.

> >

> > Having listed a lot of problems, here are a few solutions:

> >

> > 1. Make donation presumptive such that the individual must opt out of

> > donation and carry a card to that affect, and leave the family out of

> it -

> > not likely to happen in the US

> >

> > 2. Allow small (or large for that matter) payments to living kidney

> > donors - also not likely here in the US

> >

> > 3. Spend some real money on public education, etc. re organ donation.

> We

> > spend BILLIONS per year on dialysis...while a Tx and the meds after are

> very

> > expensive, studies show there is a positive NPV after about 3 years. I

> > don't know what we spend on donor education, but it isn't much and much

> of

> > that is doubtless private money.

> >

> > 4. Tighten the criteria for those who are eligible to become

reciepients

> > (i.e. having comorbid conditions, etc.) - not likely here in the US,

> > either, we have an " anti-elitist " attitude in this country...and indeed

> the

> > trend is the other way

> >

> > 5. Loosen the criteria for donation, both living and cadaver - to some

> > degree this is already being done; for over 50 cadavers the TX team

will

> > consider transplanting both kidneys into one recipient, as is done with

> > infant/young children cadaver donations. They are even allowing

limited

> > HIV+ to HIV+ donor recipient combinations. Aside from ethical

> > considerations, I think it is a shame that this woman in Florida is

being

> > allowed to starve to death....with a completely usable set of kidneys,

> > liver, etc. Typically we have restricted donors to living volunteers

or

> > those who have died traumatically....its not clear that we extend this

to

> > folks who die of stroke, heart attacks, etc. It takes HOURS for the

> kindeys

> > to become sufficiently ischemic as to be useless. Where medically

> possible,

> > organ donation should be the norm not the exception.

> >

> > 6. Loosen the criteria for organ swapping - ex my half liver for a

> kidney

> > idea. I intend to pursue this with great vigor.

> >

> > 7. Pursue methods for dialysis that more closely mimic genuine kidney

> > function - this is being pursued with vigor and largely consists of

> having

> > living kidney cells in the extracorporeal dialysis loop for

> hormonogenesis,

> > some kidney metabolic functions not related to waste removal, etc.

> >

> > 8. Pursue methods for dialysis that are more palatable to the client

> > population on a daily basis. The Aksys people seem to be doing this

> well...

> >

> > I've written a huge post, but...these things are quite naturally on my

> mind.

> >

> > Thoughts?

> >

> > Bart

> >

> >

> >

> >

> >

> >

> >

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Guest guest

To add to Pierre's comment, when I went to my transplant education

seminar, I was actually told up-front that I would be suspended from

the waiting list for not following doctor's orders, failing to keep

doctor's appointments and failing to do my lab tests at the

specified times, etc. Maybe they went even as far as refusing to do

a transplant, but I can't remember.

But yes, they take transplants very seriously, and want the patient

to be as serious about taking care of own their health.

Sophia

> Pierre and Bart,

>

> I think you do make good points with respect to #4. It is true

that there is selection that takes place now. I guess I was not

looking at that perspective when I wrote my first comment.

>

> As obesity becomes a greater health threat, as in certainly now

the case in the US, prevalence of diabetes is sure to rise as well,

and that coupled with the aging of the baby boomers is sure to put

more pressure on the dialysis and transplantation needs.

>

>

>

> Re: kidney patient sues hospital over kidney

transplant

>

>

>

> With respect to #4, if I understand what Bart is saying correctly,

I think

> this is already being done to a great extent, and has been since

the

> beginning of kidney transplants, at least regarding co-morbid

conditions.

> There are people who are suspended from the waiting list even for

being

> non-compliant with medications, treatments, etc., and there are

many

> co-morbid conditions that preclude a transplant.

>

> I can't find statistics for it this morning, but I can tell you

that in

> Canada at least, the rate of family agreement to harvest organs

when a

> relative is declared brain or cardiac dead is way more than 30 to

40%. In

> fact, in the transplant region I live in, the nation's capital

region, the

> rate is 95%. And yet people are still waiting years for a kidney.

There just

> aren't that many people dying under " suitable " conditions

nowadays. Many

> times, in accidents, the kidneys and other organs are too damaged

to be

> used.

>

> The dialysis crisis in Canada and the U.S. is really a diabetes

crisis.

> Dialysis is merely a consequence of this. The proportion of people

on

> dialysis due to immunological kidney diseases like IgAN is

actually pretty

> small and it probably has not increased much over the years -

there's no

> explosion of dialysis need from us. Most people on dialysis are

there

> because of diabetes, and second, because of hypertension. There is

also a

> hypertension crisis, possibly due to the incredible amounts of

salt on our

> manufactured and our fast foods, and perhaps also our hurried,

never-stop

> lifestyles.

>

> Right now, I'm about as poor as it is possible to be in my

province without

> being a homeless person. My monthly disability pension check is

$20 more

> than what I would get from welfare if I didn't have the pension.

So, buying

> a kidney just isn't in the cards for me, under any circumstances.

I am

> stating this as a disclaimer about my opinion, but, I think that

any

> solution which sets up a situation where the affluent are mining

the poor

> for organs is morally reprehensible. And for people who do this to

expect th

> at they must be cared for by our publicly-funded kidney healthcare

systems

> afterward is the height of selfish self-interest. One has to keep

in mind

> that a person with a kidney transplant needs almost as much

continued

> medical care as a person on dialysis, if not more - at least the

first year

> or two.

>

> Pierre

>

>

>

>

> Re: kidney patient sues hospital over kidney

transplant

> >

> >

> > >

> > >

> > > Hi Bart,

> > >

> > > You raise some very good points. I like your solutions with

the

> > exception

> > > of #4. It would be very hard to say who does and does not get

an

> organ.

> > > Although I agree in principle, it would be very hard to be

told you

> were

> > one who

> > > did not qualify for an organ.

> > >

> > > You did an excellent job of defining the problem and came up

with some

> > great

> > > solutions. I really do wish we could go to an opt out organ

donation.

> > That

> > > would really help.

> > >

> > >

> > >

> > > In a message dated 3/27/2005 12:32:02 P.M. Pacific Standard

Time,

> > > bkhphd@s... writes:

> > >

> > >

> > > Wow, this one gets complicated in a hurry.....

> > >

> > > However, my first question is how does an organization prove a

> negative?

> > In

> > > other words, for living unrelated donors here in the USA, the

> > psychological

> > > interviews and queries are designed to determine if

compensation is

> being

> > > paid directly for the kidney (as opposed to reimbursement of

expenses,

> > lost

> > > wages, and such). So I don't get the hospital refusing the

procedure

> > when

> > > both parties asserted no cash, other than expenses, was

changing hands.

> > > Covering expenses for donation, such as lost wages, is a very

common

> > > practice, and of course the medical expenses are born by the

Tx

> > recipient's

> > > insurance (be that private or Medicare or both).

> > >

> > > If one can't find a decent match amongst family and friends,

the option

> > is

> > > offered of having someone who desires to donate a kindey to

the list,

> > under

> > > the theory that the " next, " cadaver kidney would then come to

the

> person

> > who

> > > arranged the donation. In this case, though, it is hardly an

even

> > > trade.....one person gets a live donation and the other gets

a cadaver

> > > kidney, so I don't advocate this. Domino donation, in which

TWO or

> more

> > > unrelated donor:recipient pairs are arranged and transplanted

at the

> same

> > > time, are becoming more common.

> > >

> > > I am in the position above...no compatible living donors are

available.

> > I

> > > had a girlfriend who promised a kidney, but then we broke off

our

> > > relationship....and thus the offer was withdrawn. Two others

offered

> as

> > > well, but both are over 50 and are thus considered poor risks

and are

> > > ineligible.

> > >

> > > The practice of selling kidneys is known to occur, and as

macabre as it

> > is,

> > > if I had any confidence that such a thing could be done

successfully,

> in

> > > decent surroundings, etc. (and if I had sufficient coinage,

which I

> > don't)

> > > despite the ethics of it all I would consider it. Probably

wouldn't do

> > it,

> > > but would consider it.

> > >

> > > The bottom line, though, is in the US at least we are facing

literally

> a

> > > dialysis crisis, for several reasons:

> > >

> > > - Its largely paid for by the government, at more or less the

same

> rates

> > it

> > > has been for many years

> > >

> > > - Far more people (about 3x now) are expected to be dialyzing

as the

> > > boomers age and as the frequency of diabetes increases

> > >

> > > - Only about 30 to 40% of families who face the misfortunate

question

> of

> > > donation agree to do so (in fact, I had a brother who died of

a head

> > injury

> > > in 1975, and my Dad said no to him being a donor, even though

the rest

> of

> > > us, Mom included, wanted this done....a wasted death seemed

senseless.

> I

> > > begged my Dad to change his mind, but no dice. The irony of

my current

> > > situation is not lost upon me) And, as the number of folks

on the list

> > > rise, the wait time does, also. In addition, and this is a

good thing

> in

> > > one way and not in another, the supply of cadaver donors is

decreasing

> in

> > > proportion to the population (I attribute much of this to the

almost

> > > fanatical attention paid to safety...even kids on bicycles

are wearing

> > > helmets now). Good, obviously, but...

> > >

> > > - due to the huge costs associated with dialysis I expect we

will go

> back

> > > to relative rationing of this type of care. In fact we

already

> > are....most

> > > poeple in the US on in-center 3x/week hemo are underdialyzed,

and

> believe

> > it

> > > not according to Medicare, some folks skip sessions, too.

Judging by

> > > Pierre's descriptions, megatons of STUFF get used during a

dialysis

> > session,

> > > and I am sure this is true of PD as well.

> > >

> > > - For all of the above reasons I think donation should be

presumptive

> > > rather than relying on the family. Even if I have an organ

donor card

> in

> > my

> > > wallet....it is what my family says that counts....virtually

no

> facility

> > in

> > > the US will perform organ harvests, no matter what

documentation the

> > person

> > > has on him, if donation is contrary to the familial wishes as

expressed

> > at

> > > the time. This makes the organ donation card situation a

monumental

> > farce,

> > > unfortunately.

> > >

> > > - As the lifetime of a cadaver kidney is on average more or

less 10

> > years,

> > > as I am 43, I will likely need more than one transplant. The

era of 3

> > and 4

> > > transplants per recipient are over in the US, as wait times on

the list

> > will

> > > approach ten years and more because a) reciepients will be

healthier

> and

> > > live longer and B) more people will be on the list.

> > >

> > > - Someone on this list, some time ago, suggested using

criminals -

> those

> > > subject to lethal injection - as donors. Completely aside

from my

> > thoughts

> > > re the death penalty (barbaric, unnecessary, and more

expensive than

> > > lifetime incarceration) the drugs used destroy the organs

(potassium

> > > chloride, a curare deriative, and sodium thiopental - all in

huge

> > amounts).

> > >

> > > - I have suggested to my own neph that I be allowed to do a

different

> > type

> > > of swap....namely half a liver for a kidney. You should have

seen the

> > look

> > > on her face....before she said this would be far too dangerous

and she

> > > wouldn't support the concept.

> > >

> > > Having listed a lot of problems, here are a few solutions:

> > >

> > > 1. Make donation presumptive such that the individual must

opt out of

> > > donation and carry a card to that affect, and leave the

family out of

> > it -

> > > not likely to happen in the US

> > >

> > > 2. Allow small (or large for that matter) payments to living

kidney

> > > donors - also not likely here in the US

> > >

> > > 3. Spend some real money on public education, etc. re organ

donation.

> > We

> > > spend BILLIONS per year on dialysis...while a Tx and the meds

after are

> > very

> > > expensive, studies show there is a positive NPV after about 3

years. I

> > > don't know what we spend on donor education, but it isn't

much and much

> > of

> > > that is doubtless private money.

> > >

> > > 4. Tighten the criteria for those who are eligible to become

> reciepients

> > > (i.e. having comorbid conditions, etc.) - not likely here in

the US,

> > > either, we have an " anti-elitist " attitude in this

country...and indeed

> > the

> > > trend is the other way

> > >

> > > 5. Loosen the criteria for donation, both living and

cadaver - to some

> > > degree this is already being done; for over 50 cadavers the

TX team

> will

> > > consider transplanting both kidneys into one recipient, as is

done with

> > > infant/young children cadaver donations. They are even

allowing

> limited

> > > HIV+ to HIV+ donor recipient combinations. Aside from ethical

> > > considerations, I think it is a shame that this woman in

Florida is

> being

> > > allowed to starve to death....with a completely usable set of

kidneys,

> > > liver, etc. Typically we have restricted donors to living

volunteers

> or

> > > those who have died traumatically....its not clear that we

extend this

> to

> > > folks who die of stroke, heart attacks, etc. It takes HOURS

for the

> > kindeys

> > > to become sufficiently ischemic as to be useless. Where

medically

> > possible,

> > > organ donation should be the norm not the exception.

> > >

> > > 6. Loosen the criteria for organ swapping - ex my half liver

for a

> > kidney

> > > idea. I intend to pursue this with great vigor.

> > >

> > > 7. Pursue methods for dialysis that more closely mimic

genuine kidney

> > > function - this is being pursued with vigor and largely

consists of

> > having

> > > living kidney cells in the extracorporeal dialysis loop for

> > hormonogenesis,

> > > some kidney metabolic functions not related to waste removal,

etc.

> > >

> > > 8. Pursue methods for dialysis that are more palatable to

the client

> > > population on a daily basis. The Aksys people seem to be

doing this

> > well...

> > >

> > > I've written a huge post, but...these things are quite

naturally on my

> > mind.

> > >

> > > Thoughts?

> > >

> > > Bart

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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