My Kidney Challenge

[Toni]

Or we could make a change in some places that is already implemented: changing the default of consent to "yes" rather than "no" and continuing to have a volunteer situation but with "opt-out" rather than "opt-in"

I would like to see multiple changes:

1) Default-in.

2) The transplant list is sorted by what % of your adult life you have not been opted out. Children get the average of their parents. The 0/0 case (medically invalid before reaching 18) is treated as 100%.

3) The ability to put notes on the status. I have my driver's license marked no, not because I'm opposed but because 40 years ago a malarial mosquito bit me. In theory it was wiped out--but it returned after more than 20 years. Is it still lurking there? Who knows? They certainly shouldn't be transplanting any organs without the medical team knowing that piece of information!

Loren, I’m certain that you are aware, but prior to transplantation, blood is screened for transmissible disease in addition to the testing typing and cross match, and HLA groups, If the donor is known to have had a malaria infection, a highly sensitive test is performed to determine if there is any remaining plasmodium. If you’ve been properly treated you should not still have any plasmodium burden.

if everyone became a donor unless they opted out, not everyone would be a suitable organ donor, depending on age, cause of death, where the person was when they died, and of course if they carried any number of transmissible viral disease or had other conditions.

All organ donors are screened for transmissible viral diseases and increasingly for some parasitic diseases as well. These tests must be carried out and results reported in a very short time frame or the organs are useless.

This sort of testing is highly regulated to ensure the safety of any organs or blood used in transplants or transfusions.

And either way, even 10% of a 100% (a wildly high percentage) increase of orgain donations ending badly due to missed screens would be preferable.

In reality the numbers will be closer to 1% and 1000%, but it would take an inverse to the increase in tainted vs available to be a bad thing on net, a completely unrealistic outcome. You would need the increase in tainted to outstrip the fulfilled demand.

Far more people would still be dying of no organs than tainted ones even were we to increase the supply at the expense of higher taint.

There is no available world where opt-out hurts people more than opt-in. Not even concerted trolls trying to taint the supply on purpose would yield such an outcome.

Jahryn, I used to work in a lab that performed testing for blood donors and organ donors. A close friend is an organ recipient. You are absolutely WRONG here.

There is no world where it is medically ethical to transplant organs or transfuse blood that has not been thoroughly tested and screened for viral diseases and now, some parasitic diseases as well as typed and cross matched and thoroughly testing of HLA groups.

Organ transplantation is extremely expensive in terms of dollars and time and expertise. Whatever you see on television or in movies, transplants are not performed at every hospital or with the staff of an ER. Organs are harvested by experts. They are transplanted by experts. The toll on the recipient patient is enormous-and worth it if they survive the post op period and do not face any rejection issues--which can occur even with excellent matching. Healing is lengthy. Several months after receiving his organ, my friend nearly died from a post op infection that his immunosuppressed body could not clear despite complete compliance with post op care. He had to be rehospitalized for a couple of weeks in order to clear the infection and to get his original incision sites to hearl. There are more scars now than before. BTW, his donor was the ideal donor: early 20's, non-user of any substance, died in a motorcycle crash (Everyone: Wear your helmets!!!).

After a transplant, the patient is ALWAYS immunosuppressed and must be extra vigilant to avoid any type of infection. This is not a casual undertaking. Recovery is arduous. It is a big fucking deal.

I DO agree that organ donation should be the default but not everybody IS a good donor. Not every recipient who needs a new organ is a good candidate for a recipient. At my age, it is doubtful that I would make it to the UNOS list. Some people simply opt out and choose not to consider transplantation for a variety of reasons.

Doctors, UNOS and the medical community are NOT going to reduce their standards for screening because transplanting an organ that is not well matched or not properly screened to ensure it is not carrying certain diseases doesn't just mean that the recipient is likely to die some weeks or months after their surgery: they will die a difficult, painful, expensive death. The time and effort and the organ will have been wasted.

My response to Loren was merely to assure him that his corpse would be properly screened if he did want to become a donor. Of course he should speak with his medical providers and not take medical advice from some random old lady on the internet.

Another consideration: there is a short time frame between death and transplantation: a matter of hours. Donors should have died in a hospital which has the capacity to maintain the body on life support until a transplant team is able to remove the organs. So if someone passes away in their home and isn't discovered for 10 hours, then they will not be an organ donor, no matter how many cards they signed giving their consent. And even if you have signed a donor card, if your family objects, it is possible that they will elect not to use your organs. Delays in convincing the family can make the question moot.

 

[Jarhyn]

There is no world where it is medically ethical to transplant organs or transfuse blood that has not been thoroughly tested and screened for viral diseases

The world where we can test and don't is not ethical. The world in which we test imperfectly but still as well as we can and accept the increase in tainted vs clean organs due to the mechanics is still more people not dying? That one is way more ethical.

Actual human beings who need organs will, and should be afforded the right to, take 10% more risk for a greater than 10% increase in their ability to get a chance.

Even if Loren was right in that more would slip through the cracks of testing, until organ demand is met, that doesn't matter.

We can test them, and do, and should, but that doesn't change the fact that a massively increased supply is preferable even in the face of moderately increased danger, so long as the danger of having an organ transplant in the new paradigm does not outstrip the danger of not getting an organ in the old one.

 

[Toni]

There is no world where it is medically ethical to transplant organs or transfuse blood that has not been thoroughly tested and screened for viral diseases

The world where we can test and don't is not ethical. The world in which we test imperfectly but still as well as we can and accept the increase in tainted vs clean organs due to the mechanics is still more people not dying? That one is way more ethical.

Actual human beings who need organs will, and should be afforded the right to, take 10% more risk for a greater than 10% increase in their ability to get a chance.

Even if Loren was right in that more would slip through the cracks of testing, until organ demand is met, that doesn't matter.

We can test them, and do, and should, but that doesn't change the fact that a massively increased supply is preferable even in the face of moderately increased danger, so long as the danger of having an organ transplant in the new paradigm does not outstrip the danger of not getting an organ in the old one.

The risk isn't 10% more. There is ALWAYS a risk. There is a risk of rejection, even with an extremely well matched donor and even with the best immunosuppressant drug regime. Because of the immunosuppression, infection is a significant risk. It nearly killed my friend. Don't get me wrong: he's grateful he got his organ just in time, as are all his family and friends. But please do not think that this was an easy process. This was a pretty tough individual who was very disciplined. I've also known someone who elected to not be an organ recipient and who died from her organ failure.

There is no way that the medical community will relax its standards. It's too costly in terms of time and money and many many many resources and it's too costly to the patient's life and quality of life.

Which does not mean that the universal organ donation unless the person chooses to opt out is not a good idea. It's an excellent idea and I support the idea. I'm a donor, although I don't know if they'd use my organs at my age. My family ALL know my wishes to take everything useable and to use it! They're all on board, although not all of them have signed donor cards for themselves.

Unfortunately, some people will still die while waiting for their organ. Some people are not good candidates for transplantation. They are not willing to comply with the postoperative care, medication regime, follow up care and lifestyle changes necessary. Some will continue to engage in the risky behavior that put them in the position of needing an organ. Some age out: I am too old for some transplant centers to consider as a recipient.

Despite every precaution and test being performed perfectly, some recipients will not survive the transplant surgery or will die some time after from rejection or infection or...a car accident or a dozen other things. The quality of life after a successful transplant is good--but it's not the same as before whatever circumstance led the patient to need a transplant. The process of recovery is not easy and there can be relapses. Immunosuppressant drugs are better than they used to be so there is more room for matches which are not perfect in every way. Doubtless there will continue to be improvements to help people who require transplants to live. In fact, I believe in the not to distant future, organs may be grown in a lab, using the recipient's own tissue.

 

[Jarhyn]

There is no world where it is medically ethical to transplant organs or transfuse blood that has not been thoroughly tested and screened for viral diseases

The world where we can test and don't is not ethical. The world in which we test imperfectly but still as well as we can and accept the increase in tainted vs clean organs due to the mechanics is still more people not dying? That one is way more ethical.

Actual human beings who need organs will, and should be afforded the right to, take 10% more risk for a greater than 10% increase in their ability to get a chance.

Even if Loren was right in that more would slip through the cracks of testing, until organ demand is met, that doesn't matter.

We can test them, and do, and should, but that doesn't change the fact that a massively increased supply is preferable even in the face of moderately increased danger, so long as the danger of having an organ transplant in the new paradigm does not outstrip the danger of not getting an organ in the old one.

The risk isn't 10% more. There is ALWAYS a risk. There is a risk of rejection, even with an extremely well matched donor and even with the best immunosuppressant drug regime. Because of the immunosuppression, infection is a significant risk. It nearly killed my friend. Don't get me wrong: he's grateful he got his organ just in time, as are all his family and friends. But please do not think that this was an easy process. This was a pretty tough individual who was very disciplined. I've also known someone who elected to not be an organ recipient and who died from her organ failure.

There is no way that the medical community will relax its standards. It's too costly in terms of time and money and many many many resources and it's too costly to the patient's life and quality of life.

Which does not mean that the universal organ donation unless the person chooses to opt out is not a good idea. It's an excellent idea and I support the idea. I'm a donor, although I don't know if they'd use my organs at my age. My family ALL know my wishes to take everything useable and to use it! They're all on board, although not all of them have signed donor cards for themselves.

Unfortunately, some people will still die while waiting for their organ. Some people are not good candidates for transplantation. They are not willing to comply with the postoperative care, medication regime, follow up care and lifestyle changes necessary. Some will continue to engage in the risky behavior that put them in the position of needing an organ. Some age out: I am too old for some transplant centers to consider as a recipient.

Despite every precaution and test being performed perfectly, some recipients will not survive the transplant surgery or will die some time after from rejection or infection or...a car accident or a dozen other things. The quality of life after a successful transplant is good--but it's not the same as before whatever circumstance led the patient to need a transplant. The process of recovery is not easy and there can be relapses. Immunosuppressant drugs are better than they used to be so there is more room for matches which are not perfect in every way. Doubtless there will continue to be improvements to help people who require transplants to live. In fact, I believe in the not to distant future, organs may be grown in a lab, using the recipient's own tissue.

Standards will not relax, certainly, and the risk is low. I was pointing out numbers on both sides of the risk calculus, and it is a fact that with higher throughput will come higher error, checking or no.

My point was that even at much higher risk, which is higher than any possible risk Loren points to happening, it's still well within the calculus where a sick person would say "shut up and do it already".

 

[Toni]

There is no world where it is medically ethical to transplant organs or transfuse blood that has not been thoroughly tested and screened for viral diseases

The world where we can test and don't is not ethical. The world in which we test imperfectly but still as well as we can and accept the increase in tainted vs clean organs due to the mechanics is still more people not dying? That one is way more ethical.

Actual human beings who need organs will, and should be afforded the right to, take 10% more risk for a greater than 10% increase in their ability to get a chance.

Even if Loren was right in that more would slip through the cracks of testing, until organ demand is met, that doesn't matter.

We can test them, and do, and should, but that doesn't change the fact that a massively increased supply is preferable even in the face of moderately increased danger, so long as the danger of having an organ transplant in the new paradigm does not outstrip the danger of not getting an organ in the old one.

The risk isn't 10% more. There is ALWAYS a risk. There is a risk of rejection, even with an extremely well matched donor and even with the best immunosuppressant drug regime. Because of the immunosuppression, infection is a significant risk. It nearly killed my friend. Don't get me wrong: he's grateful he got his organ just in time, as are all his family and friends. But please do not think that this was an easy process. This was a pretty tough individual who was very disciplined. I've also known someone who elected to not be an organ recipient and who died from her organ failure.

There is no way that the medical community will relax its standards. It's too costly in terms of time and money and many many many resources and it's too costly to the patient's life and quality of life.

Which does not mean that the universal organ donation unless the person chooses to opt out is not a good idea. It's an excellent idea and I support the idea. I'm a donor, although I don't know if they'd use my organs at my age. My family ALL know my wishes to take everything useable and to use it! They're all on board, although not all of them have signed donor cards for themselves.

Unfortunately, some people will still die while waiting for their organ. Some people are not good candidates for transplantation. They are not willing to comply with the postoperative care, medication regime, follow up care and lifestyle changes necessary. Some will continue to engage in the risky behavior that put them in the position of needing an organ. Some age out: I am too old for some transplant centers to consider as a recipient.

Despite every precaution and test being performed perfectly, some recipients will not survive the transplant surgery or will die some time after from rejection or infection or...a car accident or a dozen other things. The quality of life after a successful transplant is good--but it's not the same as before whatever circumstance led the patient to need a transplant. The process of recovery is not easy and there can be relapses. Immunosuppressant drugs are better than they used to be so there is more room for matches which are not perfect in every way. Doubtless there will continue to be improvements to help people who require transplants to live. In fact, I believe in the not to distant future, organs may be grown in a lab, using the recipient's own tissue.

Standards will not relax, certainly, and the risk is low. I was pointing out numbers on both sides of the risk calculus, and it is a fact that with higher throughput will come higher error, checking or no.

My point was that even at much higher risk, which is higher than any possible risk Loren points to happening, it's still well within the calculus where a sick person would say "shut up and do it already".

No. As long as the standards are maintained on any individual organ donation, the risk of the recipient becoming ill from some undetected infection or not well matched markers will remain quite low.

Yes, there are cases when a recipient might be offered a less than wonderful perfect organ: Someone who is dying of liver failure, for example, as a result of Hep C *might* be offered the liver of a donor who had HepC but no liver damage yet. But their doctor might pass on that organ as a poor risk and the patient might decline, hoping for a better organ in time.

Because an organ recipient will be immunocompromised for the rest of their lives, it is urgent that they are not transplanted with organs that might carry some virus that would harm them. It is urgent that they get as close a match as possible. The closer the match, the less likelihood of organ rejection AND the less nasty the anti-rejection regime they must maintain.

Patients who have spent some time on a transplant waiting list are generally very well educated about the risks and the limitations and changes necessary to their lifestyle post transplant. The choice to go on the list and the choice to accept an organ is not at all cavalier.

Universal donor registration unless someone opts out would do wonders for helping people in need of organs. But not if they relax any standards. If people start to die after transplantation due to relaxed criteria, fewer patients needing organs will be willing to undergo a transplant.

 

[laughing dog]

1) Default-in.

This is the part I have trouble with. I'm very uninclined to give the government that kind of power.

What I'd support is remaining an opt-in arrangement, but sweeten the deal a bit. I suspect that a small tax deduction would be sufficiently attractive to get millions of the kind of people you want to voluntarily sign up to do so. The young healthy people, who don't think much about mortality. The kind that don't much bother with motorcycle helmets or gun safety or things like that either.
Tom

There is plenty of empirical research indicating that opt-out choices generate more participation than opt-in ones. The choice is the same - donate or not - whether the program is opt in or opt out, but people react differently. Nudge - by Cass Sunstein provides an easily accessible explanation and examples about how framing a question alters the response even when the decision is identical.

 

[Loren Pechtel]

Or we could make a change in some places that is already implemented: changing the default of consent to "yes" rather than "no" and continuing to have a volunteer situation but with "opt-out" rather than "opt-in"

I would like to see multiple changes:

1) Default-in.

2) The transplant list is sorted by what % of your adult life you have not been opted out. Children get the average of their parents. The 0/0 case (medically invalid before reaching 18) is treated as 100%.

3) The ability to put notes on the status. I have my driver's license marked no, not because I'm opposed but because 40 years ago a malarial mosquito bit me. In theory it was wiped out--but it returned after more than 20 years. Is it still lurking there? Who knows? They certainly shouldn't be transplanting any organs without the medical team knowing that piece of information!

Loren, I’m certain that you are aware, but prior to transplantation, blood is screened for transmissible disease in addition to the testing typing and cross match, and HLA groups, If the donor is known to have had a malaria infection, a highly sensitive test is performed to determine if there is any remaining plasmodium. If you’ve been properly treated you should not still have any plasmodium burden.

1) Maybe that's new--but when it recurred the doc ordered the normal blood smear test because it hadn't been lab-confirmed before. The lab wasn't able to do it and substituted some antibody test that was basically worthless in the situation. And the issue was hiding out, not active infection.

2) My point is looking at the organ donor card I have no way to tell them to check for it and obviously I would not be in a position to tell them. That's why my point #3--if I could say "Yes, but beware of possible latent malaria infection" I would.

if everyone became a donor unless they opted out, not everyone would be a suitable organ donor, depending on age, cause of death, where the person was when they died, and of course if they carried any number of transmissible viral disease or had other conditions.

Being listed as a donor doesn't mean they'll have any use for your organs.

All organ donors are screened for transmissible viral diseases and increasingly for some parasitic diseases as well. These tests must be carried out and results reported in a very short time frame or the organs are useless.

This sort of testing is highly regulated to ensure the safety of any organs or blood used in transplants or transfusions.

They do the best they reasonably can--but things leak through because they have to test for each thing individually. I was just reading about a new test that sequences all genetic material found and thus can identify all pathogens in the sample rather than just what they're looking for--but it takes a week.

 

[Loren Pechtel]

Even if Loren was right in that more would slip through the cracks of testing, until organ demand is met, that doesn't matter.

Huh? I'm saying that "organ donor" should be a text field that can warn the docs for rare things they need to test for. Nobody is going to consider malaria when I haven't been in the malaria zone for 40 years. My wife even rejected the hypothesis (she twigged to the symptoms faster than I did) because she knew it was impossible.

 

[Toni]

Or we could make a change in some places that is already implemented: changing the default of consent to "yes" rather than "no" and continuing to have a volunteer situation but with "opt-out" rather than "opt-in"

I would like to see multiple changes:

1) Default-in.

2) The transplant list is sorted by what % of your adult life you have not been opted out. Children get the average of their parents. The 0/0 case (medically invalid before reaching 18) is treated as 100%.

3) The ability to put notes on the status. I have my driver's license marked no, not because I'm opposed but because 40 years ago a malarial mosquito bit me. In theory it was wiped out--but it returned after more than 20 years. Is it still lurking there? Who knows? They certainly shouldn't be transplanting any organs without the medical team knowing that piece of information!

Loren, I’m certain that you are aware, but prior to transplantation, blood is screened for transmissible disease in addition to the testing typing and cross match, and HLA groups, If the donor is known to have had a malaria infection, a highly sensitive test is performed to determine if there is any remaining plasmodium. If you’ve been properly treated you should not still have any plasmodium burden.

1) Maybe that's new--but when it recurred the doc ordered the normal blood smear test because it hadn't been lab-confirmed before. The lab wasn't able to do it and substituted some antibody test that was basically worthless in the situation. And the issue was hiding out, not active infection.

2) My point is looking at the organ donor card I have no way to tell them to check for it and obviously I would not be in a position to tell them. That's why my point #3--if I could say "Yes, but beware of possible latent malaria infection" I would.

if everyone became a donor unless they opted out, not everyone would be a suitable organ donor, depending on age, cause of death, where the person was when they died, and of course if they carried any number of transmissible viral disease or had other conditions.

Being listed as a donor doesn't mean they'll have any use for your organs.

All organ donors are screened for transmissible viral diseases and increasingly for some parasitic diseases as well. These tests must be carried out and results reported in a very short time frame or the organs are useless.

This sort of testing is highly regulated to ensure the safety of any organs or blood used in transplants or transfusions.

They do the best they reasonably can--but things leak through because they have to test for each thing individually. I was just reading about a new test that sequences all genetic material found and thus can identify all pathogens in the sample rather than just what they're looking for--but it takes a week.

Loren, malaria is caused by several species of plasmodium, a unicellular parasite carried by some species of mosquitoes,

If you had malaria and completely recovered, you would no longer have any plasmodium in your body. It is unlikely that you still carried the parasite but it is more than possible that you were re-infected. I had a friend from
Cameroon who really wanted to go back to see her family but also dreaded it because she knew she would be reinfected and get sick again. She’d had malaria 3 times already.

Your body would carry antibodies against malaria after you recovered. So, a positive test fir antibodies, but not the organism itself,
A blood smear, examined under a microscope would have have shown the plasmodium in your blood if you had an active infection.

 

[Loren Pechtel]

Loren, malaria is caused by several species of plasmodium, a unicellular parasite carried by some species of mosquitoes,

If you had malaria and completely recovered, you would no longer have any plasmodium in your body. It is unlikely that you still carried the parasite but it is more than possible that you were re-infected. I had a friend from
Cameroon who really wanted to go back to see her family but also dreaded it because she knew she would be reinfected and get sick again. She’d had malaria 3 times already.

Your body would carry antibodies against malaria after you recovered. So, a positive test fir antibodies, but not the organism itself,
A blood smear, examined under a microscope would have have shown the plasmodium in your blood if you had an active infection.

The closest to the malaria zone I have been since the original infection is Tucson, Arizona and I hadn't even left Las Vegas within the window for it to be a new case. The doc (GP, but plenty of clinical experience with malaria in his work with doctors without borders--when he saw what the lab had done he swore and said he could have done it in 5 minutes himself if he had a microscope) didn't have a problem with it having laid dormant. The old antibodies had probably faded and it was too early in the infection for the new ones to cause a positive. The test they did had a high false negative rate, especially if done early in the infection.

The cyclic nature of malaria is quite a giveaway. At the point I got it I had already seen others in the group get it and it was why go to the doc? (There was also a timing giveaway--when I got sick was 7 days after we all got eaten alive by mosquitoes because we spent a day digging a ford to go around a broken bridge. The incubation period is 7 to 30 days. I was not on the right drug for the time/place, the one that I should have been on caused a see-a-doc-never-take-this-again reaction.) The third time around was just after returning to the US, as usual chloroquine stopped the symptoms but we knew it wouldn't be permanent--at that time when I saw the doc I had no symptoms and there was no test at time. The fourth time around we did get to the doc with an active infection but the lab blew it. What else has the cycles of malaria and is stopped in it's tracks by anti-malaria meds?