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.
> 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.
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.
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.
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"
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.
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).
I started to try to explain in detail why this is wrong, but it is so incoherent I gave up.
First you say organ donors are either "brain dead" or in "ciruclatory death", but according to the Wikipedia article only a few organs can be harvested in the latter case. Then you say "Most are not brain dead". But your Vice reference specifically describes the definition of brain dead and says that two doctors must agree it has happened. Are you alleging widespread murder or merely contradicting yourself? At best, this is not supported by your references.
You say that you cannot use organs ~2 hours after brain death. That is not supported by your references.
Yes, the donor body needs to "function" as far as keeping the organs oxygenated, but that merely needs a pumping heart and a ventilator. Hearts pump on their own without any nervous system control, and the lungs carry on working because a ventilator is pumping air in and out. Spinal activity is not required.
Wanna bet that's because those stats are talking about different things. First, it's kidney transplants. Significant numbers are voluntary donors.
Second those stats are about people being kept alive a significant amount of time before the doctors considered them as donors.
Amount of organs (with the donor dying as a result, so kidney ... not a great example) with the donor being kept alive for some amount of hours before the donation ? 100%.
> Are you alleging widespread murder or merely contradicting yourself?
Look there is quite a range between these 2 options. And the 2 options, thank you very much, are obviously 2 doctors agreeing correctly, and "widespread murder". I am alleging that the basis for these decisions is important to the moral problems inherent in transplants.
Also you can link to the definition and treat it like it is as accurate as a theoretical mathematical definition, but in medicine ... it just isn't. Braindead is "irreversible brain damage", and aside from the general agreement that for a short-term diagnosis (autonomous) breathing must have stopped, as well as some reflexes, there is very little agreement on what exactly is required. Can you tell the difference between the brain not giving instructions for breathing and sufficiently damaged muscles (or a subtle mechanical problem) resulting it not much actual movement ? Not in all cases. For a long-term braindead diagnosis, it is not required that the patient has stopped breathing, and reflexes can just be perfectly fine as well. And of course, doctors are to make this diagnosis with varying (lack of) equipment. Can you tell if an EEG would be flat by testing reflexes ? I can't. Can you tell blood flow through the brain based on an EEG ? (I get that if a person is awake then yes, you can. You can't tell if a brain is at 1% or 0% of normal functioning on an EEG (even 5%). You just can't. Not possible. And a scanner to diagnose brain death is just not going to happen. Even an EEG is not always going to happen)
So doctors have to, at some point, make a guess based on very incomplete information, with all sorts of pressure. Time pressure, tiredness, lack of equipment, lack of correct information, lack of staff and indeed the effect of either outcome on their relationships and eventually on their careers. This presents moral hazards. And just saying, a doctor is not going to get fired by an hospital board if they declare an alcohol overdosed patient braindead, even if he wakes up while waiting for transplant, unless it happens repeatedly (and even then) (I'm not saying it's a positive either). And are they going to be convicted in a court ? Sure. Probably. But doctors get convicted regularly for making correct decisions so that's not a factor in the decision. Hospitals and/or insurance will take care of their defense, and any consequence.
So whilst I'm saying that in your way too extreme comparison it's obviously not anywhere close to "widespread murder", I am claiming that it's not 100% correct decisions either. For a few good reasons it's not ... for a few "can't be helped" reasons it's not ... and for a few bad reasons it's not.
This is certainly false, and a lot of that comment is completely incoherent.
Per the original Harvard Med rules, brain death for beating-heart donors couldn't even be declared without 24 hours of ventilated observation of the patient.
Per DCI Donor Services (a large organ donation org), brain-dead patients today are regularly ventilators for several days while maintaining transplant-worthy status. The minimum turnaround for a donor is about 12 hours from brain death, since a full disease screen takes around 8 hours. And the maximum turnaround time after removal for even the shortest-lived organs like lungs is 4+ hours.
Possibly the commenter is trying to say that patients who enter unventilated brain death will cease to be viable donors within two hours? But that position is even more incoherent; the problem with unventilated brain death is that it promptly becomes cardiac death also.
That's only possible in cases of very limited braindead. "Mostly" a braindead person will have a slowly lowering heartbeat, and once it hits 20 or so, they die. This usually takes hours, not days.
Now, there's a gazillion different ways to be braindead. It can be that the spine is disconnected somewhere (in fact this is the most common reason, thank you traffic), and on the other end there is no sharp cutoff between braindead and in coma, where we see no damage whatsoever and can even be brought on by a normally unrelated disease (but often some form of poisoning is suspected). Therefore there can be very weird phenomena in a significant number of cases. Also the symptoms depend on the exact point the disconnection occurs. If it's deep in your back (10th vertebra or lower), you're dead in minutes, unless it's very, very deep (18+).
But mostly, you don't survive braindead for very long. Even an artifical "braindead" state (which is what barbiturate overdose patients die from) normally doesn't last more than 3-4 hours before death occurs, including the period where activity slows (so starting from the point the overdose was administered).
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..
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.)
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.
I'm on a kidney transplant list myself. I'm already aware there is a higher risk of cancer than the average population. But one had to live with the cards dealt in life so I have to accept that risk.
I'm also hoping for the success of the UCSF artificial kidney. They are in early stage testing in humans. https://pharm.ucsf.edu/kidney I think if you read up on it, there is a lot of opportunities for budding young bioengineers and material scientists to help improve on this technology. They build a precision pore size filter and coat it with human cells.
Reminds me of chemotherapy and countless other medical procedures. We do the best with what we've got. It's not like we're going to collectively say, "not going to do anything until we've come up with the perfect solution to this ailment." To an extent, I try to keep this in mind when arguing with the engineering devil on my shoulder that constantly shouts, "no, you have to do it right!"
I imagine your prognosis without a transplanted kidney is markedly worse.
I met up with a transplant patient at a seminar for candidates. Her kidneys were going bad 20 years ago but it was manageable. She ended up getting leukemia 10 years ago and went through the chemo. Then 5 years ago she got diabetes around the time she had to start dialysis. Then 2 years ago when she was about to get a transplant, they found out she had some heart issues due to the chemo treatment and needed some surgery. She finally got the kidney transplant beating all odds and now looks in great shape looking 10 years younger. I was greatly inspired by her journey.
Its possible to live reasonably long with dialysis if you don't have other health issues but yeah a kidney transplant is a lot better.
HaemoDialysis is miserable. You feel shit ~5 days out of 7, it's exhausting and depressing and it never gets better. Transplant is infinitely preferable if it's an option.
CAPD is arguably less miserable as a dialysis option but the day to day lifestyle is not exactly ideal
I have done both and did not get those side effects I only did HD for a few months and did CAPD for a year. PD is better if you can do it at home I manged to commute to London on PD.
Note HD is where they filter the blood directly, CAPD /PD is where you pump a saline solution inside you.
In the US, it varies between 2-10 years depending on location and blood type. Right now my best case is around 5 years of which I've accumulated 2 years.
As a melanoma survivor, I'm no longer eligible to be an organ donor. In fact, I could even donate blood until the American Red Cross changed their guidelines for eligibility in 2017:
Benign cancer or tumor: Acceptable to donate
Basal cell carcinoma: Deferred for four weeks after date of surgical removal
Squamous cell carcinoma (skin, cervix, or oral cavity): Deferred for four weeks after date of surgical removal
Malignant cancer (e.g., breast, prostate, or colon cancer and melanoma): Deferred for one year after treatment is completed
Leukemia, Hodgkin’s and non-Hodgkin’s lymphoma, and myeloma: Ineligible to donate permanently
Kaposi’s sarcoma: Ineligible to donate permanently
Don't donate to the Red Cross anyways. I was a long time donor and I recently told them off when I actually took the time to read the packets and disclosures and it turns out they ship your blood off to universities for testing and research -- with or without your consent, which I object to on principle alone, but also there is now a moral unknown for me if my blood is going towards research I morally object to. Again, maybe not most people's here problem with it, but on principle I do not like not being in control of what is done with own blood (I want it to go help people, not be test subjects), and probably most people here can at least agree with that.
Also, they sell your blood to hospitals at a hefty markup. Donate directly to the hospitals -- most if you walk in and say you are there to donate blood will happily accept you. Second best is probably a community blood center.
I accept your view as your own, but I personally believe that research at universities is helping people, just indirectly and with a time shift and a level of uncertainty.
I am sure it is, and I vastly support probably >95% of it, and more than happy to if I am given the information of which university and for what type of research in the event that there is a moral concern of mine, or ethical concern with the university in question.
Is this different than in Europe? We do have lots of high profile University Hospitals. Hospitals around / with university for our highest education and research.
I would most likely elect to donate to the vast majority of them, however, compulsory use of my blood in research without giving me the option to even give my consent, or opt out in the rare occurrence that it is of moral or ethical concern to me, is anti-American, and I disagree on it on two accounts: both principally, and practically. In an age where we give up more and more of our liberties and freedoms for a little more convenience, I believe you have to take stands where you can. If the Red Cross would like to ask me if I would like my blood used for medical research, and would disclose what type of research, I would be more than happy to donate to them again.
I can't speak for the Red Cross, but in the research settings I was involved in, donated blood (or tissue) was subject to strict review, from ethical review boards, guaranteed donor anonymity and required record-keeping.
Blood (in my setting) was from healthy anonymous donors, and was used for experimental models. The blood would be spun down on a gradient to separate into red and white and other fractions, and we would typically take just the white cells for immunology experiments, perhaps with more specific FACS/MACS separation as well, before use in the actual experiments. Because we wanted "generic" white cells, the donor background was irrelevant and we had no information about the donor. [We could provide the package lot number to the NHS if there was a need to pass information back, but we ourselves would never be allowed to know the identity.]
The other side was diseased samples from sick patients. For example, cancer biopsies. One lab member did a lot of work with prostate cancer, and got samples delivered after prostate biopsies or surgeries in local hospitals. These required explicit donor consent, on top of the anonymity already in place. They can again be tied back via sample/lot numbers, but the patient identity is fully protected.
The main problem with asking for consent with blood donations for specific medical research is that the blood isn't allocated for a specific purpose up front. It's easier to ask generically for consent for any purpose, then it can be directed to research if it's surplus, or split into fractions and used for multiple purposes. Sometimes we didn't know we would get any blood until the hospital phoned us a few hours before delivery, and sometimes they didn't have any. It's difficult logistically to handle this (though not impossible, of course).
Even if it's surplus to requirements? It has a shelf life, demand is variable, and it's a better fate than simply throwing it away.
I'm a regular donor in the UK, and it also happens to our donations. It can be used as is, separated into different blood products (plasma, platelets etc.), or used for research purposes. It's not realistic to expect it only to be used for transfusions; there's a lot of uses for it in addition, and I can't see why you would want to control that.
The immunology research group I used to work in routinely received blood deliveries from the NHS blood service. It was used for HIV research if I recall correctly, and was done in partnership with the NHS.
University experiments involving human specimens are not "random". They are all approved by ethical review panels, and presumably may help to save people in the future.
I had lymphoma, which is categorized as a blood cancer. As a result, I'm not allowed to donate blood (ever again) or organs. The thing is, I'm almost certain that this isn't recorded anywhere. Not that I want it being recorded (on principle for privacy rights; I don't actually care), but I'm pretty sure I could donate both blood and (I hope never to be in this situation) organs, and no one would be any the wiser.
It probably doesn’t help that the same drugs that stop you rejecting organs hammer your immune system and weaken it’s surveillance for foreign entities.
Heart recipient died from sepsis before developing cancer. There were two kidney recipients, right kidney recipient remains alive because of nephrectomy.
Now, imagine a blood donor with occult disease... To my knowledge a case of carcinoma (epithelial cell origin) transmitted via blood donation has not been recorded yet, however, hematologic maligancies are theoretically very possible.
It's interesting to me that the survivor required chemotherapy in addition to removing the immune system suppressants. Perhaps the immune system evading strategies of tumors can be exploited in future transplant operations?
What presumably happened is that there was an undetected early cancer. That left circulating tumor cells throughout a body otherwise filled with healthy tissues. Unless you find those specific cells, there will be no sign of a problem. (At least not until they find a home and start a new cancer.)
I'm not an expert, but my understanding is that the probability or rate (or expected time) of metastasizing varies a lot depending on the type of the tumor. (I looked into this a bit when I was diagnosed; it was more or less likely to metastasize within a somewhat short time, depending on the exact type of the tumor.)
I'm sure the immunosuppressants needed after a transplant would increase the risk in any case.
If it wasn't a surprising situation, it wouldn't have been in a medical journal.
However its possibility isn't crazy. Per https://www.ncbi.nlm.nih.gov/pmc/articles/PMC22534/ it seems that cancer cells can be detected in the blood before the cancer itself is detectable by traditional means. Therefore an undiscovered cancer could well have left circulating cells in multiple organs.
Yes, but it's largely because of the lifelong immunosuppression to not reject the transplant reducing the body's ability to combat cancer. Of course, it's still better than not having that organ!
In addition, different organs need different amounts of immunosuppression. Livers are used to filtering random things and thus the body is more tolerant of livers (needs less immunosuppression). Some older liver transplant recipients can actually drop their immunosuppression drugs completely.
The exact transplant protocol also influences long-term levels of immunosuppression and thus cancer risk.
Yes, but not just from the transplant. The immunosuppressant drugs following a transplant also increase your risk of cancer. Dramatically for certain types of cancers.
I just wish outcomes like this were stronger motivation for the world to work harder on other solutions. But it never seems to go that direction. Instead, it spurs discussion of finding ways to improve transplants.
That's because transplants save thousands of lives every year, rapidly turning some of the sickest people this side of death into healthy, productive, living individuals.
As a liver transplant survivor, it's hard to describe how dramatic a cure transplant represents.
Of course, there is a great price: my life in exchange for the donor's. And so many people are listed for transplant who never receive an organ.
Those facts and the threat of disease, among many others, drive the research into alternatives (xenotransplantation, synthesized organs, etc). But transplant is currently the only hope for the desperately hopeless facing organ failure.
What kind of rebuttal are you looking for? Transplant surgery saves lives now. Any new method is an unknown time away. Is the world supposed to stop saving lives with the known working method with all of its pros and cons in order to spend that money developing something that may or may not ever happen? From where I see it, trying to improve upon an existing method so the success rate/viability after the procedure increases is not a wasted effort. It's kind of like refactoring code that already works. You plow through it to get to work originally, then you go back and keep tweaking it until it no longer crashes or has bugs and works as efficiently as possible.
I'm not looking for a rebuttal at all. I don't see why the sentiment needs to be decried, shot down and downvoted.
Why is it such a crime to wish for more research into other approaches? That sentiment in no way suggests any of the ugly things you are taking it to mean.
It's not a crime to wish for more research, but the total amount of research dollars is currently fixed (you can't just ask for more and get it, you ask for more and somebody else doesn't get it), and the methods that already work today, already work without additional research investment.
My comments on a public forum have exactly zero impact on how research dollars get spent. The limited nature of research funds is absolutely not reasonable justification for downvoting my initial comment and for multiple people feeling compelled to shoot me down for daring to voice it.
I have a form of cystic fibrosis. It is a genetic disorder and classified as a dread disease. It accounts for about a third of all adult lung transplants and about half of all pediatric lung transplants in the US.
I used to participate in CF email lists and forums. I've heard what transplant is really like.
In spite of the glowing testimony here, once you get listed for transplant, you basically sit around hoping someone dies tragically young in the prime of their life who will be a match for you. The surgery is hugely invasive and takes many months of recovery. You will take anti-rejection meds the rest of your life. Etc.
Additionally, most transplant candidates have conditions that involve slow deterioration over many years. It isn't like it typically happens suddenly and without warning.
I was diagnosed late in life, a bit over 17 years ago. I had a hole in my left lung. That hole has closed up and I've spent more than 17 years getting myself healthier while the entire world heaps abuse on me.
I have been thrown off of multiple email lists and forums. I'm routinely called a liar and a lunatic. When I complain to mods about the mistreatment, it's common for me to be told I'm the problem though I'm not breaking any forum rules.
I spent nearly six years homeless. I got damn little support while sleeping in a tent and trying to sort my problems while getting well while much of the world shit all over me.
This isn't really a can of worms I wanted to open. I don't see why it is a big damn deal to quietly suggest that maybe we could research other options too. I'm not suggesting some Repo Man scenario here.
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.)