News Story: With kidney transplants, a question of how to ration life

[Rerun]

Not everyone on dialysis has their name on the list.  But if they decide to go on the list, say 10 years after starting dialysis, they would be higher on the list than a dialysis patient who was already listed for three years.  Prioritizing the list to years on dialysis, not how long the name was on the list.

No, because they must not HATE dialysis enough to get on the list in the first place.  So, no to that thought!   

[coravh]

Here in Canada you can't go on the list until you are on dialysis.
Cora

That's not what I mean.

Not everyone on dialysis has their name on the list.  But if they decide to go on the list, say 10 years after starting dialysis, they would be higher on the list than a dialysis patient who was already listed for three years.  Prioritizing the list to years on dialysis, not how long the name was on the list.

Gotcha. And yes, that's how they do it here. You get credit for "time served".

Cora

[kitkatz]

But like I said I have been waiting for years to get listed, but the med teams will do nothing.  I was healthier three years ago when they looked at me for transplant than I am now doing the same thing.  I think I should get credit for years served! I did everything I was supposed to then and now.  The wheels turn very slowly here.

[angela515]

Well I just came across this post and have read each post, now I have some comments.

I don't think UNOS should change to start the time for longest on dialysis, HOWEVER, I do believe that people like kitkatz who have been TRYING to get on the list, should have all those years on dialysis added in to their wait time on the list. For someone who's been on dialysis 10 years, but has never wanted to be on the list, now all of a sudden they do.. there time should start when they first get on the list.. their time on dialysis should not be added in like kitkatz, b/c the difference is, she is trying, they were not.  Because for people like me who started dialysis and started trying to get on the list right away... its unfair to just take how long you have been on dialysis into consideration.. I would be waiting a long time if that were the case, b/c only months after starting dialysis I was on the list. Get what I'm saying?

Also, I do think age should play a big role in UNOS system. I agree with Karol, the available kidney should go to the person it would benefit most. Meaning a 20 year old kidney needs to go to someone young, not someone in their 60's and such. I also believe there should be an age limit to even getting on the list... a lot of people on the list now, don't have many years left with or without a kidney... i don't see how its fair they should get a kidneythat would last many years over a younger person who could last right along with that kidney.

Again, I agree with ReRun on a few things... someone who is coming to dialysis on a stretcher.. they don't even know whats going on.. I mean cmon, their family needs to let go already, they are putting that person through torture in my opinion. Also, I think in the end, the final decision should be made by a human, not a computer.

The kidney I just received, was a perfect match, and from what i know, that means I went to the very top of the list when it was all entered into the computer... then it was up to my doctors to decide if I was medically and psychologically prepared for this kidney. Obviously every year we wait on the list our health needs to be re-tested and updated o make sure we are still healthy enough to stay on the list, and also our psychological view on everything should be considered... as over the years, dialysis does take its toll and some people end up just wanting to stop dialysis.. end it all....

As for living donors, when i was on dialysis in 99, and 20 years old... my mother DEMANDED to be tested, and would NOT take no as an answer. That kidney failed after 5 years, she was not even upset, I was however, as I felt I let her down, but she says I did fine, and she wouldn't change anything. She has even gone to the extent of saying that if I'm on dialysis again when she gets older she will be putting it in her will that she wants her other kidney (if its healthy enough), to go to me, as she already knows we match. I would do the same for my daughter, and I guess in order to understand that way of thinking you would have to know what its like... For me, I have a daughter, so I know exactly how my mother feels.

I also have 3 brothers... 1 demanded to be tested when i went back on dialysis in 2004.. he was tested, he matched, however when they did the ultrasound, his left kidney, the vein to connect to me, is too small so if they took it out of him, they wouldn't be able to connect it to me. His right kidneys vein is wrapped around a main artery, no doctor will go near that kidney, and I wouldn't want them to regardless as the chances of cutting the main artery is too great. 1 of my other brothers doesn't like needles, and will not be tested, and I'm fine with that, its his choice. My last brother was going to be tested, but he got Lyme Disease and can no longer donate blood or anything else, and is on the national Lyme Disease registry so the Dr's know he cant donate blood or organs.

This is a very touchy subject, and everyone will have their own opinion, in the end... it comes down to Dr's and UNOS on making the call.

[jbeany]

Here's a new wrinkle to the discussion:

What if the list is prioritized by the number of years the patient is on dialysis, not by the years he or she is on the list?  Is that a good move for UNOS?

I don't think it's the top priority, but they are now using time on dialysis as a consideration here in Michigan at U of M, Ann Arbor.  If I get on the list, my "wait time" will start as of Dec 11, 2006 - my first day on dialysis.  The surgeon said part of the reason for doing so was that a large number of patients aren't referred by their own docs when they first should be.  Counting their time on dialysis is a way of balancing that.

They do use age as a consideration as well - at least for the kids - anyone 18 or under gets top priority here, as well.  I don't know how much they use it for adults.

A perfect match is still top priority over everything else.

[DeLana]

My last brother was going to be tested, but he got Lyme Disease and can no longer donate blood or anything else, and is on the national Lyme Disease registry so the Dr's know he cant donate blood or organs.

Hmm, that's odd... Lyme disease was never a reason to be permanently prohibited from donating - after all, its curable by antibiotics (may, however, have some permanent effects if treated too late.)  In addition, the guidelines for donating organs are much more generous than those for donating blood - many conditions or diseases that blood banks won't accept (I'm permanently rejected because I lived in Europe*!), are perfectly acceptable for organ donations.

DeLana

*And am supposedly at risk for getting mad cow disease!  Come on, I don't even eat meat!    But the blood donor guidelines can be ridiculous.  However, nobody would hesitate to accept me as an organ donor...

[DeLana]

Thanks, okarol, for sharing this.  Very interesting, lots of questions raised.

- Why not consider only kidneys from elderly (diseased) donors for elderly patients?  There should still be plenty.

- If someone rejects offers from living donors, should he/she be placed on the list?  (Of course, the potential living donors need to be counseled regarding the odds of graft survival - and in this case, recipient survival - but thorough counseling is part of the process anyway.)

Personally, I think the kidneys of very young people - like in this case - should be considered for younger recipients, or at least those under 60.  I don't think that very old patients (>80) should get priority, however, they should have a chance at an organ from a donor over 60 or so (or from a living donor).

JMHO.

DeLana

[renal30yrs]

Things can turn rather strange at times.  I've spoken with several elderly patients who made it quite clear "THEY DO NOT WISH" to undergo translant procedures and "Take all those meds".  Somehow their nephrologists must have decided to add them to the list halfway against their wishes...

[kitkatz]

I think patients need to be very aware of what is being offered to them as a transplant.  Ask questions and get answers.

[angieskidney]

I think patients need to be very aware of what is being offered to them as a transplant.  Ask questions and get answers.

I agree!

[angela515]

My last brother was going to be tested, but he got Lyme Disease and can no longer donate blood or anything else, and is on the national Lyme Disease registry so the Dr's know he cant donate blood or organs.

Hmm, that's odd... Lyme disease was never a reason to be permanently prohibited from donating - after all, its curable by antibiotics (may, however, have some permanent effects if treated too late.)  In addition, the guidelines for donating organs are much more generous than those for donating blood - many conditions or diseases that blood banks won't accept (I'm permanently rejected because I lived in Europe*!), are perfectly acceptable for organ donations.

DeLana

*And am supposedly at risk for getting mad cow disease!  Come on, I don't even eat meat!    But the blood donor guidelines can be ridiculous.  However, nobody would hesitate to accept me as an organ donor...

Not sure why... but they said he can't donate due to the Lyme Disease, he's not allowed to even be tested. It's all fine anyways, since I dont need one at the moment. I dont know if he would of been tested without the Lyme Disease or not... I was just getting around to asking him, his wife was willing though.

[renal30yrs]

The best short to medium term solution could be the European-style presumed consent system.

[angieskidney]

The best short to medium term solution could be the European-style presumed consent system.

There was a vote where I live and it got turned down

[Wattle]

Here's a new wrinkle to the discussion:

What if the list is prioritized by the number of years the patient is on dialysis, not by the years he or she is on the list?  Is that a good move for UNOS?

In Australia the list is from the day of your first dialysis treatment. Even if you are lucky enough to be put on the list early, it doesn't count. They say you are given 'points' for your age ect. But it really comes down to dialysis time.

Ie: 2 patients are a perfect match- The one on dialysis longest is more likely to be given the transplant.

[Wattle]

But like I said I have been waiting for years to get listed, but the med teams will do nothing.  I was healthier three years ago when they looked at me for transplant than I am now doing the same thing.  I think I should get credit for years served! I did everything I was supposed to then and now.  The wheels turn very slowly here.

Kat- Here you would be back dated to when you started dialysis. I do think you deserve the credit for the years served!!!  You would jump ahead of me.

[Dman73]

The reality is that selection is made by celebrity status & wealth, best match, time on list, age & physical condition (the sicker will go first).

I was 37 years old on D for 14 years in '87' and listed for 8 years and never transplanted with high antibodies and got passed up for a kidney that went to a 65 year old man because he was less stable on dialysis. Back then the sicker trumped age and time on list.

With the Obamacare program I believe the 30 thru 50 working age segment will be the priority.   

[ToddB0130]

They can't get those artificial kidneys up and running and 'working' fast enough !

[jeannea]

UNOS is in a terrible situation. There are approx 100,000 people waiting for a kidney. There are nowhere near that many donated kidneys. I believe that the people who work on the list are trying to do the best they can for everyone. The rules have changed before and they will change again. When society changes like having an aging population they have to re-evaluate. I am very disturbed when things are compared to the Nazis. I don't think that's appropriate.

I do believe that families should be encouraged to look at the whole picture and what they are doing to Grandma. Those old people brought in on stretchers totally unaware should not be there. We should all acknowledge that life does end. We will miss Grandma when she dies but that is not the way to keep her alive.

For those who talk about rationing care, care has always been rationed. Have you ever been told your insurance company won't cover a procedure or a medicine? That was rationing. We need to figure out appropriate rationing and also do a little self rationing. We should all have living wills and health care power of attorney and be clear with our family what we want and don't want. I know my illness is terminal and I have been very clear that they are not to torture me.

I did accept my mother's kidney for my first transplant. She wanted to. It lasted 11 years. There was no guilt when it failed. But then I had no living donor offers for my second and got a cadaveric donor. My father is an incompatible blood type. The rest of my family doesn't want to be tested. You can't make them. But if someone had offered and matched, I would have taken it.

I think it's really complicated and made worse by our personal emotions about our disease.