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The Longest Transplant Train
August 15, 2012 12:03 AM   Subscribe

30 Donors, 30 recipients in the world's longest kidney transplant train. The National Kidney Registry facilitated the chain. At any time 90,000 people are waiting for a kidney transplant, each year 4,700 of those will die.

According to the Scientific Registry of Transplant Recipients kidney transplant recipients have the highest survival rate of organ donations.

The other Julia Roberts blogs about her two children who are kidney transplant recipients due to Polycystic Kidney Disease.

The one drawback to the work of the NKR is that they must now charge a $3,000 fee which Medicare will not cover, even though taking a patient off of dialysis saves Medicare up to $1,000,000.
posted by SuzySmith (49 comments total) 7 users marked this as a favorite

 
Maybe we should just grow them?
posted by the man of twists and turns at 12:36 AM on August 15, 2012 [2 favorites]


Computer models suggest that an additional 2,000 to 4,000 transplants could be achieved each year if Americans knew more about such programs and if there were a nationwide pool of all eligible donors and recipients.

If only there were some kind of wired network arrangement which would allow these computers of which you speak to communicate.

Hats off to Ruzzamenti.
posted by Segundus at 12:51 AM on August 15, 2012 [2 favorites]


These circles give me a lot of hope.

My dad has PKD. My brother and I grew up knowing that since the gene mutation has a 50/50 chance of passing to offspring, at least one of us would get it, so I was probably about 12 when dad hit end stage and we vowed that whichever one of us was healthy would donate a kidney to the one who was not. After all, it takes a cadaver or a miracle to find a kidney from outside your gene pool, and doctors recommend blood relatives as the best natural match. We had a plan.

But the plan didn't work. I was diagnosed six years ago and my brother was diagnosed just a few years after that, and the kidney we had both been counting on sharing was no longer one that could help. I've spent years mourning that I can't save my brother after he so generously offered to save me. He worries about his two daughters, but we fear that securing a diagnosis this early would preclude them for qualifying for health care later in life.

Dad's held on to his kidney for fifteen years (after dialysis transformed this brilliant, bulletproof man into a foggy stranger) and doctors marvel at how well he is doing. But he beat the odds due to a generous cadaver donation and excellent care. I hope my brother and I are so lucky.
posted by mochapickle at 12:59 AM on August 15, 2012 [11 favorites]


Segundus: "If only there were some kind of wired network arrangement which would allow these computers of which you speak to communicate."

What, some manner of interconnected network, joining computers around the world? Preposterous!

Good reminder for everyone to mark "Donor" on their driver's licenses. If you're not, why not?
posted by barnacles at 1:03 AM on August 15, 2012 [1 favorite]


He worries about his two daughters, but we fear that securing a diagnosis this early would preclude them for qualifying for health care later in life.

god American society is seriously fucked.
posted by lalex at 1:18 AM on August 15, 2012 [16 favorites]


Regarding the computer models, surgeon Dorry Segev (quoted in this related Times piece) is married to mathematician Sommer Gentry who has done some of the modeling. They also teach swing dancing.

Register to become an organ donor. And talk to your loved ones about your decision.
posted by knile at 2:05 AM on August 15, 2012 [1 favorite]


He worries about his two daughters, but we fear that securing a diagnosis this early would preclude them for qualifying for health care later in life.

IIRC Obamacare has solved that, hasn't it? Pre-conditions no longer being acceptable for denying health coverage?

If things had worked out differently, my wife and I would've been part of such a donor circle, where I would've donated a kidney to some stranger in return for a kidney from said stranger's donor going into my wife. As fortune had it however, we turned out to be perfect matches already, so it wasn't necessary. Had it been the case though, we would've never met the generous donor, Dutch guidelines in these cases prescribing anonymity.
posted by MartinWisse at 2:07 AM on August 15, 2012


Register to become an organ donor.

This.

and remember, you can be a living kidney donor and the long term life expectancy of living with one kidney are the same as with two. The only risk you take is with the operation itself, which is largely routine by now; not something you should do on impulse, but not quite life altering either. The cartoonist Jana Christy did a comic about it some time back.

In my case I was out of hospital in less than three days, with the only complication being a wound infection that was annoying at most.
posted by MartinWisse at 2:36 AM on August 15, 2012 [8 favorites]


"Good reminder for everyone to mark "Donor" on their driver's licenses. If you're not, why not?"

I'm 36 and in reasonably good health. If I sign the donor card, there's no guarantee that the hospital is not going to let me die instead of trying to safe my life should I get into a car accident and then sell off my pristine viscera to a bunch of debilitated 1%-ers who can pony up the kidney money.

Isn't it weird how the wealthy always seem to get their organs in the nick of time?

Also, if enough people decide not to donate their organs, it's one more great reason to legalize stem cell research.

Like AMOTAT said earlier in the thread, "why don't we just grow them?"
posted by Renoroc at 4:35 AM on August 15, 2012 [2 favorites]


. If I sign the donor card, there's no guarantee that the hospital is not going to let me die instead of trying to safe my life should I get into a car accident and then sell off my pristine viscera to a bunch of debilitated 1%-ers who can pony up the kidney money.
Do you have any evidence that this happens, or are you just crying wolf to have an excuse to be selfish and scared? This is covered at OrganDonor.Gov and at least thrice at Snopes, if you prefer to trust Cecil Adams & Internet strangers vs. the experts.
posted by knile at 4:51 AM on August 15, 2012 [15 favorites]


Good reminder for everyone to mark "Donor" on their driver's licenses. If you're not, why not?

Marking donor is not enough. Depending on the situation, your parents or spouse or other relative may be the one who makes the decision. Yeah, even if you've marked donor on your license.

15 years ago, my best friend suffered an aneurysm at the age of 29 and was declared brain dead the same day. Despite what she'd marked on her license, the donor organization waited until her mother arrived and got her permission for the donations. My friend lived 2000 miles away from her mother and was 29.

Have the conversation with your friends and family - have it a couple of times so that everyone around you knows what you want and hopefully that's how it will happen. Explore other legal options so your driver's license isn't the sole thing saying what you want.
posted by jaimystery at 5:06 AM on August 15, 2012 [1 favorite]


@ knile
There's a really good book that came out his year, The Undead by Dick Teresi. It discusses the history of brain death and organ donation in a logical way. Not a conspiracy book, just looks at something that doesn't usually get looked at.
posted by AnnElk at 5:11 AM on August 15, 2012 [1 favorite]


Good reminder for everyone to mark "Donor" on their driver's licenses. If you're not, why not?

Because not everyone drives. Because not everyone lives in a country where that is the system. Because some people have religious conflicts with organ donation. Because some people have trust issues and would give to a close relative but not to a stranger. Because not everyone is raised the way you want them to be and people hold fast to barriers: they would never knowingly donate to a muslim, or a Jew, or a black person. They have a right to those misguided views.

I live in Europe and there's talk of an opt-out system taking the place of our various national piece-meal opt-in systems. I would love it if we had an opt-out system but the right to opt out absolutely must be preserved. People's reasons don't need to make sense to other folks.
posted by DarlingBri at 5:17 AM on August 15, 2012


DarlingBri: "I live in Europe and there's talk of an opt-out system taking the place of our various national piece-meal opt-in systems. I would love it if we had an opt-out system but the right to opt out absolutely must be preserved. People's reasons don't need to make sense to other folks."

The adoption of the opt-out system didn't go well here in Chile, lots of clamoring about human rights, dictatorship, etc. Hopefully it'll go better there.
posted by Memo at 5:33 AM on August 15, 2012


So, the hospital and the doctors all make money from the organ recipient, and they also bill the still-grieving family of the donor? Seems like there are plenty of reasons to suspect that there are mixed motivations at work in this system, and that respect for the lives of the critically ill and concern for not coersing families are given short shrift. An o. d . of narcotics and injecting Bernadine into a still-living person to sterilize their organs seems like care one might not want to preauthorize on their drivers license.
posted by Stoatfarm at 5:34 AM on August 15, 2012 [2 favorites]


Betadine, not Bernadine. Thanks, autocorrect.
posted by Stoatfarm at 5:36 AM on August 15, 2012 [1 favorite]


Frankly, I like the idea of injecting Bernadine into a still-living person, provided Bernadine can be miniaturized, looks like Raquel Welch and has a team including Donald Pleasance working with her.

But seriously folks... I had a form of hepatitis many years ago which has precluded me, like many others, from being an organ donor. My mother-in-law left her body to a nearby teaching hospital, and I may consider doing something like that instead.

I was shocked by how little I knew about this horror before being educated by a co-worker who lives in its shadow.
posted by kinnakeet at 5:44 AM on August 15, 2012


I'm 36 and in reasonably good health. If I sign the donor card, there's no guarantee that the hospital is not going to let me die instead of trying to safe my life should I get into a car accident and then sell off my pristine viscera to a bunch of debilitated 1%-ers who can pony up the kidney money.

This feeling is widespread, and I can't for the life of me figure out how it's still got legs. Do you truly and actually think that a doctor who allowed his patients to die would pass unnoticed in an era where average-patient-stay-duration is calculated to two decimal points to determine hospital billing, and where there's a national database that flags patients who get narcotics from two doctors in twelve months? This bewilders me. It's a viciously cynical mindset, betraying a bizarre distrust in medicine that, if extrapolated to other parts of your life, would make you into Howard Hughes: that EMTs, nurses, and doctors, working in perfect silence, in concert with the wealthy elite, are conspiring to siphon off your precious bodily fluids organs for their benefactors. They're not getting paid for it (because that would show up like chaff on the radar), and it's directly counter to the ethos that every medical professional displays in every other part of his/her life, and no one in medicine ever mentions it even to help coordinate the effort, and yet every emergency room in the country must be working in lockstep.

I'd chalk it up to the same harmless conspiracy-theory-fixation that sends tourists out into the wilderness in the Pacific Northwest to photograph the Sasquatch, but for one crucial difference: the guys out hunting Bigfoot aren't causing the deaths of other people with their eccentricity.

Sign up for your organ donor card, damnit.
posted by Mayor West at 5:52 AM on August 15, 2012 [25 favorites]


Not too long ago, I read an article that a doctor had published in a medical journal. I cannot find it now, but seem to remember that the doctor held some sort of position with the American Medical Association. It talked about how we define brain-dead, and told some disturbing things, like that they give the brain-dead person anesthesia before removing the organs just in case, and that some doctors had proceeded with organ removal even though the person's body was clearly experiencing pain (and that other doctors refused to do this anymore). He went into both sides of why this might happen, but the truth is we really don't have a definitive answer. I'm pretty sure I read the article because of the book AnnElk mentions.

Horrifying. Imagine being a family member, trying to make the right decision about organ donation for a loved one. I circled back with my immediate family, and reminded them that I am very willing to be an organ donor, and that they should never question this decision even if later it turns out that I did feel it or whatever. We just can't know, and we can only make the best decisions we can. If my family is having that talk, I believe I'm really already gone or close enough.

I would, however, like a hit of that general anesthesia. Just in case.
posted by Houstonian at 6:07 AM on August 15, 2012 [2 favorites]


The organ donor is reconnected to what is carefully not referred to as life-support. Their donation to the US$20 billion a year industry is made without further anaesthesia and they are now without rights or advocates as a "BHC" (beating heart cadaver), a non-human, effectively. Hardly how you would expect to be treated as the giver of a "gift of life". From a WSJ article "What you lose when you sign that donor card": "In a 1999 article in the peer-reviewed journal Anesthesiology, Gail A. Van Norman, a professor of anesthesiology at the University of Washington, reported a case in which a 30-year-old patient with severe head trauma began breathing spontaneously after being declared brain dead. The physicians said that, because there was no chance of recovery, he could still be considered dead. The harvest proceeded over the objections of the anesthesiologist, who saw the donor move, and then react to the scalpel with hypertension."
posted by Stoatfarm at 6:39 AM on August 15, 2012 [4 favorites]


And once the organs are out for transplantation, there is a great deal of valuable material still to be harvested, for commercial gain by unknown entities. The sharks are in the pool, guys, muddying up the very noble intentions of some of our fellow citizens. Until donor registries can be properly segmented so that human-to-human gifted donation can be guaranteed as the limit of what is done to a donor cadaver, there is a moral justification for opting out of the donor registry.
posted by Scram at 6:58 AM on August 15, 2012 [3 favorites]


Opt-out hasn't gone well in places it has been tried. Israel "decided to try a new system that would give transplant priority to patients who have agreed to donate their organs."
posted by atomicstone at 7:02 AM on August 15, 2012 [1 favorite]


If some shadowey cabal is getting rich off my bits, and has vivisected me even though there was an X percent chance I could make a permanent recovery -- and I'm comfortably certain X is small for all relevant cases; you still have to hire nurses and surgeons to actually do the bidding of your evil conspirators, and it's going to be hard to recruit a large number who score sufficiently high on their evilness tests during the application process -- so what. Because my organs could still save the lives of a number of people who would otherwise die. They don't just take a kidney; they can take a number of organs over a period of days. Mary Roach writes about organ harvesting in Stiff. It sounds ghastly. So what. It helps a lot of people.

I would love it if we had an opt-out system but the right to opt out absolutely must be preserved. People's reasons don't need to make sense to other folks.

No, they don't, but it's also true that I don't have to respect their medieval views one whit. A religious or philosophical objection tomorgan donation? Fine, we can put you in the ground so bugs can eat you instead. And the rest of us will be perfectly justified in rolling our eyes at how uselessly dumb your faith or philosophy is. If someone's sky man tells him it's a sin not to donate his organs, I feel pretty ok with reminding him that his sky man isn't real.
posted by samofidelis at 7:33 AM on August 15, 2012 [1 favorite]


A month or two ago, I heard a /really/ interesting interview on Bob Edwards Weekend with Dick Teresi, who's written a book about the disturbingly blurry line between life and death that governs whether organs can be harvested. It's called The Undead: Organ Harvesting, the Ice-Water Test, Beating Heart Cadavers--How Medicine Is Blurring the Line Between Life and Death. Sadly /this/ interview's not available to listen to online, but there are NYT, Baltimore City Paper, and Boston Globe reviews of the book online, though, along with a few interviews (NYT blog, Maclean's, Terry Gross) with the author. Teresi has also written a couple of articles for the Huffington Post and Salon that cover similar ground. (It's been interpreted as one-sided and alarmist by some, though.)

I didn't come away from the interview vowing to tear up my donor card or anything like that, but I did have a new, somewhat troubling perspective on how messy and imprecise the whole process can be.
posted by orthicon halo at 7:46 AM on August 15, 2012 [3 favorites]


I didn't come away from the interview vowing to tear up my donor card or anything like that, but I did have a new, somewhat troubling perspective on how messy and imprecise the whole process can be.

Really? Did you really think that there is such a thing as "the Line Between Life and Death" and that "Medicine" is "blurring" it? Were you really that ignorant?

Worrying about the doctors wanting to kill you to get your precious, precious organs is on the line of thinking vaccinations can cause autism.
posted by MartinWisse at 8:31 AM on August 15, 2012 [5 favorites]


"they also bill the still-grieving family of the donor"

In the case of my friend, she had no insurance (well, she worked for Wal-mart at the time & had their insurance which is mostly the same thing) and her mother specifically was told that the medical bills for keeping my friend in ICU & on life support for almost 4 days plus the ambulance care would be paid by the donor organization.

Knowing my friend's mother (who had no money herself), I know I would have heard about it if they had billed her.
posted by jaimystery at 8:51 AM on August 15, 2012 [2 favorites]


Some of us have even more noble ambitions for our earthly remains, ambitions which require that our femurs not be broken down with mallets.
posted by Scram at 9:26 AM on August 15, 2012 [2 favorites]


I'm signed up as an organ donor--just hope there's no hitches when I finally meet Mr. Boneman. I'd be willing to donate a kidney now, but mine aren't functioning all that great as is. Can't give blood, can't donate kidneys, eyes going bad, hell to grow old.

He worries about his two daughters, but we fear that securing a diagnosis this early would preclude them for qualifying for health care later in life.

IIRC Obamacare has solved that, hasn't it? Pre-conditions no longer being acceptable for denying health coverage?


All insurance companies need is one little loophole.... And believe me, they'll spend millions looking for it.

...they must now charge a $3,000 fee which Medicare will not cover, even though taking a patient off of dialysis saves Medicare up to $1,000,000.

Because the poor must be punished for their laziness and lack of funds.
posted by BlueHorse at 9:29 AM on August 15, 2012


There was an article about Beating Heart Cadavers in Discover (some fairly graphic surgical images) in May which, Houstonian, might be what you remember reading? It certainly has some similar content.

I was unsettled by the article, but it mostly served as a reminder to put the organ donor sticker on my health card. (Which is how we roll up here in Canada.) Our understanding of death, and of brain death, isn't perfect and won't be for a long time; but I'd still rather be saving several lives than lying in bed slowly dying as a non-thinking vegetable or even thinking but locked in and unable to respond. And I believe that medical staff do their best to save their patients' lives--whether they are organ donors or not.
posted by snorkmaiden at 9:39 AM on August 15, 2012 [2 favorites]


And once the organs are out for transplantation, there is a great deal of valuable material still to be harvested, for commercial gain by unknown entities. The sharks are in the pool, guys, muddying up the very noble intentions of some of our fellow citizens.

Let's say a heartless corporation is able to make exactly 10 million dollars off your donated tissue. But there's a 50% chance that your organs would be able to save one person's life.

Adjust those numbers as you wish. At what point would it be morally ok not to donate? You're not putting a value on life, merely that a corporation making that extra money would make life so much worse for everyone else that it wouldn't be worth it to possibly save someone's life.

Unless that dollar value is astronomically high and the chance of saving someone's life astronomically low it would be immoral not to donate (and maybe you can work while you're still alive to reform the system).

The few anecdotes about people prematurely dying because the surgeons wanted the organs means there's an astronomically small chance that you donating may decrease your lifespan, but by not donating you're making a trade-off between your infinitesimally lengthened life expectancy and the possibility of saving someone else's life.

I don't know how anyone can look at the possible outcomes and say the system is too broken to donate.
posted by Luminiferous Ether at 9:48 AM on August 15, 2012 [2 favorites]


Is the person whose life might hypothetically be saved a serial killer?

There is clearly a need for more transparency and more choice in the industry of organ and tissue donation. Personally, if my earthly remains are going to provide that much profit for corporations, I'd like the opportunity to designate specific charities or individuals to receive a reasonable portion of it.
posted by Scram at 9:52 AM on August 15, 2012 [1 favorite]


MartinWisse: I didn't say that I think doctors are scheming to take people's organs (nor does the book say that, as far as I know). Whether I'm ignorant or not is a matter of opinion, I suppose, on which we'll have to differ.

The title of the book's rather hyperbolic, granted -- and I suspect that's what you were reacting to mostly -- but I don't think it's all that foolish to acknowledge that we have a medically defined distinction between someone who's "alive" and someone who's "dead" (placed in quotes mainly to indicate that the definitions of these two states, too, have been fluid over time). That distinction has changed over time, as medical knowledge has improved and interpretations of that knowledge have changed. Some people (like this author, clearly) are uncomfortable with these shifts, or with the prospect that judgement calls about those distinctions (and there are many, many judgement calls in medicine up and down the line) might be swayed by whether the possibility of useful organ procurement is on the table.
posted by orthicon halo at 9:53 AM on August 15, 2012 [1 favorite]


Some folks in here are alleging that there is a financial motive for organ transplants:
...sell off my pristine viscera to a bunch of debilitated 1%-ers who can pony up the kidney money.
Their donation to the US$20 billion a year industry...
So, the hospital and the doctors all make money from the organ recipient.... Seems like there are plenty of reasons to suspect that there are mixed motivations at work in this system...

Let's continue ignoring the part where doctors are strongly motivated and ethically required to provide high quality care to their patients, and approach this in the most cynical way possible. Because that seems to be Metafilter's specialty recently. (We'll also be ignoring that transplant organs or tissues cannot be sold in the US, that the doctors making the end-of-life determination and the doctors making the transplant determination are different groups of doctors. We'll also be ignoring all the other countries with less broken, non-profit-driven health care systems.)

If you are in the condition to donate organs, you are on life support, with no brain function. This is an incredibly lucrative state for the hospital; all those fancy machines hooked up and billable, with none of the pesky care or question asking of a non-vegetative patient. And you're dead already, so it's not like they can even fuck up the care.

Meanwhile, down the hall in the dialysis unit, two people come in for half a day to be hooked up to their own expensive machines, which is thousands of dollars a pop, three times a week, and you don't get to stop unless you die. This is also an incredibly lucrative business for the hospital; a guaranteed customer for very regular, expensive procedures.

If your family donates your organs (you are already brain dead, remember), the hospital has to take you off life support, and stop billing your insurance tens of thousands of dollars a day. Two dialysis patients are given your kidneys, which means that they are no longer paying for dialysis; the medications aren't cheap, sure, but immunosuppression is way cheaper than dialysis. Yes, a transplant surgery costs money -- what surgery doesn't? But by the end of the month, the hospital is financially behind where they would have been without the transplants, and they have shut off two long-term continuous money flows. From a how-much-do-the-doctors-make perspective, there is simply no financial incentive to transplant organs.

It's almost like it's a procedure that can help people live, and improve their quality of life.
posted by Homeboy Trouble at 10:02 AM on August 15, 2012 [8 favorites]


As a person who would be a donor, I can still respect people's decision to not be donors. When doctors are publishing articles in medical journals debating the ethics of the current guidelines for "brain death" as used to identify donors, then surely we don't need to sneer at those who have questions, or concerns, or decide that this is not for them.

I think the best thing they could do is to be really open and honest about the whole thing. Not just the "you are giving eyesight to a blind child!" stuff, but the hard stuff too. Like, brain death is not the same thing as heart death -- it was defined by a Harvard committee in 1968 and culminated as the Uniform Determination of Death Act -- and we're not really sure if you are feeling pain during organ removal and Ph.D/M.D ethicists question whether they are killing you or not (ethically, not legally, because that act prevents them from being charged with a crime). Like, your parts may go to for-profit organizations. Like, probably you should forego the open casket funeral and opt for closed casket or cremation. Like, all of this might happen and the recipient die anyway. Even like, there have been a few terrible instances where someone was declared legally dead and then they lived.

I'm not talking about emails with a dozen "FW:" in the subject line that tell of someone who woke up on ice in a hotel bathroom sans kidneys. I'm talking about doctors, who understand more about the human body and the transplant process than most of us here.

If doctors worry about these issues, publish in journals about these issues, and continue to discuss these issues among themselves, then I think it is a bit simplistic to fluff of a non-doctor's same concerns.

There will still be people like me who still mark donor on their license and tell their family this is what they want, but speaking clearly to people about what's really happening -- even if it is unpleasant -- is, in my opinion, the most ethical thing they can do.
posted by Houstonian at 10:18 AM on August 15, 2012 [2 favorites]


Like, brain death is not the same thing as heart death -- it was defined by a Harvard committee in 1968 and culminated as the Uniform Determination of Death Act

If we're being honest, you also need to note that brain death definitions and standards of care were most recently updated in June 2010 by the American Academy of Neurology.
posted by Homeboy Trouble at 10:27 AM on August 15, 2012


Is the person whose life might hypothetically be saved a serial killer?

It's far more likely to be a fellow MeFite.

There is clearly a need for more transparency and more choice in the industry of organ and tissue donation. Personally, if my earthly remains are going to provide that much profit for corporations, I'd like the opportunity to designate specific charities or individuals to receive a reasonable portion of it.

One of the big ethical issues in organ donation is around the idea of payment for organs. If people can choose who they are donating organs to, then it's a very short step towards the recipient being able to offer the donor money. From there, it's a short step to the nightmare scenarios you and others raised above about financial concerns entering into the decision of organ donation and potentially going across to end-of-life. I'm not opposed to more control for donors in terms of organs vs. tissues used for medically necessary procedures vs. tissues used for cosmetic procedures. (If this is even possible - maybe the same tissue product is used both as skin for burn victims and in a cosmetic procedure.) But anything beyond that risks creating the incentives that fearmongers allege already exist in the system.
posted by Homeboy Trouble at 10:38 AM on August 15, 2012 [1 favorite]


Earlier this year, Facebook made it very easy to become a donor through their site.
posted by roger ackroyd at 11:16 AM on August 15, 2012


All insurance companies need is one little loophole.... And believe me, they'll spend millions looking for it.

This. This is why I don't dare drop insurance coverage, even though I pay through the nose for it, and even though I'm years away from needing expensive end stage, lifesaving procedures. Those transplant circles require all parties to have medical insurance to participate. It's more important for me to have insurance (I don't actively use) than a roof over my head. And the roof is cheaper.
posted by mochapickle at 11:34 AM on August 15, 2012


Earlier this year, Facebook made it very easy to become a donor through their site.

All this does is make it easy to publish to your friends that you went through the appropriate steps to register officially to be an organ donor (DMV, etc). I highly doubt that the "I'm a donor" flag on Facebook would hold much legal weight.

Informing your family and friends of your donor status _is_ an important step (and is one of the most personal pieces of information that I have let Facebook have about me), but signing up on Facebook is _not_ enough.
posted by sparklemotion at 12:24 PM on August 15, 2012 [1 favorite]


I have my organ donor card signed, even though it is unlikely to do anything as I am a cancer survivor who is not in no evidence of disease (NED) status. At this point they could take one cornea and maybe some skin.

I have it signed anyway, because what if I do go into NED status for enough time that someone could have a better life with my organs? What if that one cornea helps someone to see their child clearly? What if the kidney that didn't have cancer, can take someone off of dialysis?

Hell, what if someday I am in NED status and the kidney I have fails. I hope, and pray, that someone will donate to me, and save my life. At this point, I know I wouldn't get a transplant, but someday I hope to get those three damn letters back on my chart.
posted by SuzySmith at 1:50 PM on August 15, 2012


From a how-much-do-the-doctors-make perspective, there is simply no financial incentive to transplant organs.

You are right, there isn't.

But the largest hospital operator -- owned by a US senator! -- was just found guilty of doing unnecessary heart operations on tens of thousands of patients in order to bilk insurance providers out of billions of dollars. Some of those criminal surgeons probably do organ transplants too.

Given that recent history, I can't blame anyone for being extremely skeptical about the profit motive behind someone who wants to take their organs.
posted by miyabo at 1:57 PM on August 15, 2012 [3 favorites]


I can't help but feel that people who worry about whether or not organ donation is pushed for profit reasons, in the context of an American medical industry where everything is profit driven save a few holdouts like, well, organ donation do not quite have their priorities right.
posted by MartinWisse at 2:09 PM on August 15, 2012


Include me on the list of MeFites who have received organ transplants. In my case, I have Alport Syndrome, which is a very rare hereditary condition. I have had three renal transplants; the first two were from relatives, and my current transplant came from a deceased donor. My first two transplants each lasted under 2.5 years. My current transplant passed the three year mark in May.

For years, the preferred source of donor organs was from relatives of the recipient ("living related transplants"). Genetic matching is obviously easier, and the transplants last longer. This is still largely true, even as genetic testing has gained finer and finer granularity; one of the first questions doctors are likely to ask someone with chronic kidney failure is, "Is there anyone in your family who might be willing to donate a kidney?" Unfortunately for the sick people, many of them don't have someone who can or will donate, so they end up on the list. More recently, living non-related transplants have become workable. Unfortunately, many people in need of organs don't have willing friends who are a genetic match to them. Chain transplants, like the one discussed in this post, are a burgeoning field. It's pretty cool science and coordination, not to mention a creative solution to a difficult problem.

There's some weird misinformation and it seems like some fear going on in this thread. When it comes to renal transplantation, the issue is one of quality of life—you're not going to die without a kidney, because you can go on dialysis. Dialysis is horrible. It has long-term health consequences, some of which are not fully understood. Dialysis damages your heart, memory, and energy level in very noticeable ways. It's also hugely expensive.

Some financial clarification (in the US): none of my donors has ever been billed anything having to do with the transplant. My insurance has paid for everything. Further, with the exception of a tiny loophole that I happen to fall into, once someone receives a kidney transplant they become eligible for Medicare. The problem with this is that said Medicare coverage is only good for three years, after which you are kicked to the curb and responsible for your own expensive immunosuppressants. There are strict laws and ethics prohibiting anything even resembling the sale of organs in the US.

I was raised Jewish, and when I needed my first transplant at 19, my parents asked their rabbi what the Jewish position was on donating organs (given the religious restrictions about being buried whole). He replied that the duty to save a life superseded the instruction to be buried whole. This was in a large Conservative Judaism congregation in Oregon. There may be other religions with restrictions against donation, or other brands/views of Judaism that disagree with my parents' rabbi, but I don't know of what they are. Having said that, people should get to opt-out. Right now, it's very easy to opt-out in the US: just don't do anything and you're good. I hadn't heard about the Chilean experiment until this thread, but the Israeli one always struck me as kind of silly. It's not an opt-out system, either (unless I really misunderstand how it works). It was designed to incentivize a population that is strongly disinclined to donation due to their religion. I don't think that's as much of a problem elsewhere as it is there.

Transplants are incredibly wonderful and helpful things. If I hadn't been able to get one, either because of lack of insurance or having an ignorant family, my life would have effectively stopped at 19. Because of mine, I've been able to live a somewhat "normal," if interrupted, life. If you don't want to donate, don't. They won't take your organs without your consent. If you do want to make a difference after you don't need your body parts any more, please make sure your relatives/heirs/power of attorney people know and will respect your wishes. In the meantime, I'm going to hope that we streamline the UNOS rules and create an opt-out system.
posted by sleepinglion at 2:34 PM on August 15, 2012 [6 favorites]


I was elated in December 2001 when I received a cadaveric kidney transplant after less than 3 months on the list. I thought my prayers were answered and my problems were over. Instead, it lead to the worst 18 months of my life. I made the right decision with the facts available at the time, but I wish that kidney would have gone to someone who could have used it longer than 13 months. It's not always a miracle. I'm happy for those who are better off after a transplant, but you never know how it will turn out. I have problems now that I don't think I would have if I'd have just stayed on dialysis.

I was recovering in my hospital room after the transplant when the chaplain came by and asked if I wanted him to pray with me. I'm not religious, so I told him "I'm doing OK, things are looking up for me, why don't we pray for the donor and his family?" Even though it didn't work out for me, I appreciate their generosity and selflessness in a time of extreme grief, and I hope that others benefited from it more than I did. I hope the donation gave his loved ones some comfort and peace.
posted by Daddy-O at 3:38 PM on August 15, 2012 [2 favorites]


conspiring to siphon off your precious bodily fluids organs for their benefactors.

I don't think it's asking too much to let donors have some say about where their organs wind up - backed up by law. After all, having your pieces fed into a machine which has clearly become far more motivated by profit than demonstrable caring is an understandable concern.

Along the same lines, a lot more people might support paying more taxes -if- they had some degree of control over where the money goes. While that was infeasible in the past, it's certainly not now. It sure beats the typical institutional "shut-up-and-pay" attitude, apparently born from some sense of entitlement.
posted by Twang at 9:33 PM on August 15, 2012 [1 favorite]


I don't think it's asking too much to let donors have some say about where their organs wind up

"My heart better not wind up in any goddammed queer."

No, I think not.

Again, worrying about the profit motivations behind organ transplants is pointless when your entire health system is driven by profit motivation.
posted by MartinWisse at 11:22 PM on August 15, 2012


"My heart better not end up in someone like Dick Cheney or Steve Jobs who use their power and influence to get to the top of the transplant list."
posted by miyabo at 7:31 AM on August 16, 2012 [1 favorite]


Dick Cheney EATS your hearts.

Perhaps my heart should go to someone who kicks puppies--then they would cry and know the error of their ways, and the world would be a better place with hearts and puppies and love.
posted by BlueHorse at 10:02 PM on August 17, 2012


Again, worrying about the profit motivations behind organ transplants is pointless when your entire health system is driven by profit motivation.

You're already in the middle of the ocean, why worry about drowning and enjoy your seawater. No, thanks. I do not plan to be carved up, quite possibly still conscious or conscious enough to be in great pain, my last thought being that my family will be left with crushing medical bills and given the cold comfort that I've become some sort of saint, and here's your bill, the 2nd mortgage desk is on your way out. Are families offered even counseling if they have misgivings or discomfort later?

"My heart better not wind up in any goddammed queer."

While I happen to share your dislike of that kind of bigotry, one's values and one's body are their property. To violate it during life is a crime, to violate a will is a case for civil courts. Why is one's body not treated with this respect, even when values lie outside the current mainstream? Would either of us wish to have no voice, through our will and executor nor through our families, as our bodies are carved up to save just those sort of bigots?


Thanks but am I still allowed to refuse thus honor?
posted by Stoatfarm at 8:16 AM on September 1, 2012 [1 favorite]


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