5 ms·

The opposite problem is a compelling one as well. My transplant surgeon says that "Snow White isn't going to be your organ donor", meaning that patients must un

by mhalle 8y ago

The opposite problem is a compelling one as well. My transplant surgeon says that "Snow White isn't going to be your organ donor", meaning that patients must understand that every organ will have flaws and exposure to disease, exposure to imperfect lifestyles, etc. None are perfect. But transplant recipients don't need a perfect organ. They just need one that will get them through their natural life. A "good enough" one. This mindset is important for the moment when an organ becomes available. Many patients on the wait list for organs actually turn down donor offers because of some imperfection the doctor told them about. In fact, some people turn down an organ just because another patient previously turned it down - even though the reason might have nothing to do with the viability of the organ itself. The consequences of such a decision can be fatal. Instead, my surgeon pioneered the idea of transplanting Hepatitis C infected livers into patients who needed transplant because of HepC-driven liver failure. His idea was that young people recently infected with HepC who die tragically are often in otherwise excellent health (HepC is a slowly progressing disease) and make good donors. His work allowed him to clear out the backlog of patients awaiting liver transplant at his center, with success rates as good as any other hospital. And today, it's possible to kill HepC with anti-viral agents post-transplant. (Minor edit for clarity.)

Laforet 8y ago
This is interesting but very, very ahead of its time. I know a couple of surgeons who have done a lot of research to prove that liver with a moderate degree of steatosis (fatty liver) is still viable as grafts, because every now and then they have had to cancel a scheduled transplant because the donor liver turned out to be more fatty than the standards would allow. They are optimistic but it would still take anywhere between 5-20 years for enough evidence to accumulate and change the view of regulators.
candiodari 8y ago
There are many problems with organ donation. From moral problems with collecting organs (esp. in specific political environments, but even in the west, questions arise where doctors are paid for organs. Even when unpaid, delivering organs is very good for doctor's careers, which raises questions about decision making). And on the receiving end there's also serious moral and practical questions. Should this organ go to A or B ? Both will die if they don't get it. It must suck badly to answer that question even if we have clearly advanced over the years. There's other issues, like what is the reward for the organ donor ? Can we allow (some) rewards ? There's also big differences in the different possible procedures. Liver transplant and bone marrow transplant ... are merely painful for the donor. They don't result in the loss of an organ. Should we allow for compatible donor search and allow communication in these cases ? (granted, while a liver transplant is essentially a big needle in your abdomen for ~40 seconds with no ill effects, bone marrow transplant is ... very painful, even afterwards, so there's only so much sedation helps). I'd say yes. Others are resulting in the loss of a mostly redundant organ, like kidney or lung transplants, and then there's the transplants of organs that will result in the death of the donor, like heart or pancreas transplants. It will be a very good day where we can just grow organs from a patients own cells, because they will solve essentially all the above problems, as well as eliminate most, almost all, quality problems with organs.
- walshemj 8y ago
  Err why is "delivering organs " good for a doctors career - and most organ donors (90% in the UK) are dead
  - candiodari 8y ago
    Can we once and for all get that myth out of the air ? Organ donors are not dead. That'd be great ... but it's just not how the world works [1]. They are either "brain dead", or in "circulatory death" (usually referred to as "awaiting cardiac arrest" internationally) (definitions here [2]), which is not entirely unrelated but very different from dead. Most are not brain dead (if they didn't have injuries they would be expected to recover), and there is, for example, a significant chance they'd wake up if left without sedation (they have however been diagnosed with essentially a serious blood leak and cannot reasonably be expected to survive an operation. But for several hours, all that will happen is a slow and steady drop in the oxygen content of their blood (and I'm not even mentioning that at times the problem with the operation is that the infrastructure and/or personnel for an operation is not available rather than it being impossible to execute)). You cannot transplant organs that have not been oxygenated (meaning heart beats, lungs work) for ~20 seconds. That has essentially zero chance of success. (and no, oxygenation doesn't stop when they take out the organ, obviously that's one thing they prevent from happening) You cannot transplant most organs that have been in a body that's "brain dead" for ~2 hours. That has near zero chance of success. So transplanting an organ from a person that has stopped breathing 20 seconds before the organ was taken out, or that stopped controlling their body 2 hours before the organ was taken out ... is no more than a death sentence for the organ receiver (even in the case of a not-immediately-critical organ, a failed organ donation procedure will weaken a receiver so much that their survival is in doubt. Kidneys ... perhaps you can suvive 2 failed donations. Anything else ... no way). In practice, in most cases doctors need to make the decision to proceed with organ donation at least 1 hour before the organs are actually taken out, and the donor body needs to function during that time (meaning heart beating, lungs pumping, at least partially operational spinal cord). [1] https://tonic.vice.com/en_us/article/zmv853/exactly-what-happens-when-an-organ-donor-dies https://tonic.vice.com/en_us/article/zmv853/exactly-what-hap... [2] https://en.wikipedia.org/wiki/Non-heart-beating_donation https://en.wikipedia.org/wiki/Non-heart-beating_donation
thebooktocome 8y ago
> Instead, my surgeon pioneered the idea of transplanting Hepatitis C infected livers into patients who needed transplant because of HepC-driven liver failure. His idea was that young people recently infected with HepC who die tragically are often in otherwise excellent health (HepC is a slowly progressing disease) and make good donors. This idea saved my father's life. He wouldn't have normally qualified for a "perfect" liver, but was able to receive one that already had the same strain of Hep C, and if memory serves was also slightly fatty.
walshemj 8y ago
Interesting - actually saying yes to a transplant is a big step many people cant say yes the first time I could not for example. I did pass on one kidney where the donor might have been hiv+ - the surgeons second line was don't worry they have really good drugs for HIV now. I still had ok kidney function so thought it was best to let some one else in worse health have the kidney.
- jjaredsimpson 8y ago
  I couldn't imagine accepting that. What about having sex? And the cost of drugs? That seems like a ridiculous options. Especially with the "might have"
  - walshemj 8y ago
    Depends how ill you are - I was still managing without dialysis at that point.
agumonkey 8y ago
I tried to discuss this with oncologists, not organ transplants but the idea of controlled failure to buy time. They only cared about protocol etc etc..
- Bartweiss 8y ago
  In fairness, most patient-facing doctors have approximately zero freedom around ideas like these. For a particularly vivid lesson, it's worth checking this out: http://slatestarcodex.com/2017/08/29/my-irb-nightmare/ http://slatestarcodex.com/2017/08/29/my-irb-nightmare/ The short version is that a psychiatrist noticed there's a screening test for bipolar disorder which is used without any solid study backing it up. He proposed running a test; give a bunch of patients formal, full-length diagnoses, give them the screening also, and see how often they match. This is the easiest thing in the world. Both the screening test and the full diagnostic were already in use, and could be deployed without any justification. The only 'study' here was to do both and compare them. Except. Except that this is medicine, and it's overseen by IRBs, not doctors or researchers, and there isn't a non-study treatment plan in the country that would stand up to the rules of IRBs. After a year of bureaucratic crap, our intrepid protagonist managed to scrape together a study-worthy amount of data. And then it got audited, and after another nine months, was halted for an impossible-to-fulfill list of idiotic revisions. That was to administer an already-in-place questionnaire, without using it for diagnosis. I'm pretty sure the assignment "experiment with controlled failure in cancer patients" would drive most IRB victims to quit medicine and become subsistence farmers. (I'm on a soapbox here, I know, and I'm sorry. It doesn't make the idea bad. But I have a lot of sympathy for why doctors would respond to research ideas like they're being asked to wrestle a tiger.)
  - agumonkey 8y ago
    recently there was a piece saying oncology should get a bit back to early days strategies. less bureaucracy, less layers and instead more science and more care.

by mhalle 8y ago

Laforet 8y ago

This is interesting but very, very ahead of its time. I know a couple of surgeons who have done a lot of research to prove that liver with a moderate degree of steatosis (fatty liver) is still viable as grafts, because every now and then they have had to cancel a scheduled transplant because the donor liver turned out to be more fatty than the standards would allow. They are optimistic but it would still take anywhere between 5-20 years for enough evidence to accumulate and change the view of regulators.

candiodari 8y ago

There are many problems with organ donation. From moral problems with collecting organs (esp. in specific political environments, but even in the west, questions arise where doctors are paid for organs. Even when unpaid, delivering organs is very good for doctor's careers, which raises questions about decision making). And on the receiving end there's also serious moral and practical questions. Should this organ go to A or B ? Both will die if they don't get it. It must suck badly to answer that question even if we have clearly advanced over the years. There's other issues, like what is the reward for the organ donor ? Can we allow (some) rewards ? There's also big differences in the different possible procedures. Liver transplant and bone marrow transplant ... are merely painful for the donor. They don't result in the loss of an organ. Should we allow for compatible donor search and allow communication in these cases ? (granted, while a liver transplant is essentially a big needle in your abdomen for ~40 seconds with no ill effects, bone marrow transplant is ... very painful, even afterwards, so there's only so much sedation helps). I'd say yes. Others are resulting in the loss of a mostly redundant organ, like kidney or lung transplants, and then there's the transplants of organs that will result in the death of the donor, like heart or pancreas transplants. It will be a very good day where we can just grow organs from a patients own cells, because they will solve essentially all the above problems, as well as eliminate most, almost all, quality problems with organs.

walshemj 8y ago
Err why is "delivering organs " good for a doctors career - and most organ donors (90% in the UK) are dead
- candiodari 8y ago
  Can we once and for all get that myth out of the air ? Organ donors are not dead. That'd be great ... but it's just not how the world works [1]. They are either "brain dead", or in "circulatory death" (usually referred to as "awaiting cardiac arrest" internationally) (definitions here [2]), which is not entirely unrelated but very different from dead. Most are not brain dead (if they didn't have injuries they would be expected to recover), and there is, for example, a significant chance they'd wake up if left without sedation (they have however been diagnosed with essentially a serious blood leak and cannot reasonably be expected to survive an operation. But for several hours, all that will happen is a slow and steady drop in the oxygen content of their blood (and I'm not even mentioning that at times the problem with the operation is that the infrastructure and/or personnel for an operation is not available rather than it being impossible to execute)). You cannot transplant organs that have not been oxygenated (meaning heart beats, lungs work) for ~20 seconds. That has essentially zero chance of success. (and no, oxygenation doesn't stop when they take out the organ, obviously that's one thing they prevent from happening) You cannot transplant most organs that have been in a body that's "brain dead" for ~2 hours. That has near zero chance of success. So transplanting an organ from a person that has stopped breathing 20 seconds before the organ was taken out, or that stopped controlling their body 2 hours before the organ was taken out ... is no more than a death sentence for the organ receiver (even in the case of a not-immediately-critical organ, a failed organ donation procedure will weaken a receiver so much that their survival is in doubt. Kidneys ... perhaps you can suvive 2 failed donations. Anything else ... no way). In practice, in most cases doctors need to make the decision to proceed with organ donation at least 1 hour before the organs are actually taken out, and the donor body needs to function during that time (meaning heart beating, lungs pumping, at least partially operational spinal cord). [1] https://tonic.vice.com/en_us/article/zmv853/exactly-what-happens-when-an-organ-donor-dies https://tonic.vice.com/en_us/article/zmv853/exactly-what-hap... [2] https://en.wikipedia.org/wiki/Non-heart-beating_donation https://en.wikipedia.org/wiki/Non-heart-beating_donation

thebooktocome 8y ago

> Instead, my surgeon pioneered the idea of transplanting Hepatitis C infected livers into patients who needed transplant because of HepC-driven liver failure. His idea was that young people recently infected with HepC who die tragically are often in otherwise excellent health (HepC is a slowly progressing disease) and make good donors. This idea saved my father's life. He wouldn't have normally qualified for a "perfect" liver, but was able to receive one that already had the same strain of Hep C, and if memory serves was also slightly fatty.

walshemj 8y ago

Interesting - actually saying yes to a transplant is a big step many people cant say yes the first time I could not for example. I did pass on one kidney where the donor might have been hiv+ - the surgeons second line was don't worry they have really good drugs for HIV now. I still had ok kidney function so thought it was best to let some one else in worse health have the kidney.

jjaredsimpson 8y ago
I couldn't imagine accepting that. What about having sex? And the cost of drugs? That seems like a ridiculous options. Especially with the "might have"
- walshemj 8y ago
  Depends how ill you are - I was still managing without dialysis at that point.

agumonkey 8y ago

I tried to discuss this with oncologists, not organ transplants but the idea of controlled failure to buy time. They only cared about protocol etc etc..

Bartweiss 8y ago
In fairness, most patient-facing doctors have approximately zero freedom around ideas like these. For a particularly vivid lesson, it's worth checking this out: http://slatestarcodex.com/2017/08/29/my-irb-nightmare/ http://slatestarcodex.com/2017/08/29/my-irb-nightmare/ The short version is that a psychiatrist noticed there's a screening test for bipolar disorder which is used without any solid study backing it up. He proposed running a test; give a bunch of patients formal, full-length diagnoses, give them the screening also, and see how often they match. This is the easiest thing in the world. Both the screening test and the full diagnostic were already in use, and could be deployed without any justification. The only 'study' here was to do both and compare them. Except. Except that this is medicine, and it's overseen by IRBs, not doctors or researchers, and there isn't a non-study treatment plan in the country that would stand up to the rules of IRBs. After a year of bureaucratic crap, our intrepid protagonist managed to scrape together a study-worthy amount of data. And then it got audited, and after another nine months, was halted for an impossible-to-fulfill list of idiotic revisions. That was to administer an already-in-place questionnaire, without using it for diagnosis. I'm pretty sure the assignment "experiment with controlled failure in cancer patients" would drive most IRB victims to quit medicine and become subsistence farmers. (I'm on a soapbox here, I know, and I'm sorry. It doesn't make the idea bad. But I have a lot of sympathy for why doctors would respond to research ideas like they're being asked to wrestle a tiger.)
- agumonkey 8y ago
  recently there was a piece saying oncology should get a bit back to early days strategies. less bureaucracy, less layers and instead more science and more care.