When you die, I will likely learn more about you than anyone else ever has. IamA Anatomical Donation Coordinator and when you die, I help you become an eye and tissue donor. AMA!
I have been trying to do these AMA's every three months since I joined reddit because I love trying to educate people about the truth of being an organ/tissue donor. There are way too many misconceptions about being a donor, so I just like trying to clear them up.
A few things: I am based in the United States, where we have an opt-in donor registry, I know someone countries have an opt-out (which I would prefer!), so I just want you to know that I may not know how things work in your country, but ask anyway. Also, I specialize in eye and tissue donation, so I am not perfectly knowledgeable about organ donation, but again, feel free to ask away.
As for my proof, I have done four of these already, so feel free to look at them. Perhaps I have already answered your question on one of them:
edit: 1615 PST. I am still answering
No matter someone's visual acuity, anyone (who is medically safe) can still donate: we only recover the cornea for transplant. People who are legally blind can still donate, for example.
I am concerned that somebody accepting my donated eyes will be able to see all of my secrets from the grave.
Confirm or deny.
Plead the fifth.
Can you describe the process of harvesting in detail? From the point of the patient expiring to harvesting?
Also, many people are under the impression that if you die on the street (like a car wreck) organs can be harvested once the body is taken to the hospital. I always disagreed; I thought you had to be on controlled life support in the hospital to be eligible to donate. Which is true?
In order to be an organ donor, you must be on the vent in the hospital. You cannot donate organs once you are declared legally dead (cardiac dead). An organ donor must be only brain dead, which is determined in a multitude of ways.
If you die in a car wreck, depending on the condition of the body and the person's medical history, you can likely be a cornea donor and maybe donate some tissues like heart valves (car wrecks tend to make tissue donation difficult due to the extent of injuries to the bones).
The simple process goes like this:
A person dies at a hospital, we get called, we look into their medical history and if safe to donate, we contact their family and attempt to complete paperwork. No one can be a donor without paperwork. Once paperwork is done and reviewed, we dispatch technicians to do the recover either at the hospital or at a funeral home.
This is fascinating. I had no idea you had to be on a vent to donate most of your organs.
Yeah, and it is one of the many reasons why there is no truth to the idea that doctors won't try to save you if you are registered to be a donor.
I actually think that's worse though. I would rather not be kept artificially alive
That's why people have DNR/DNI's on their medical record - they don't want any attempts to keep them alive if they are not able to breath on their own.
How much paperwork is there?
The majority of the paperwork is an interview about the person's medical and social history. Very similar to the one asked when you donate blood and can take around 30 minutes to do.
Are you a donor yourself?
I am certainly registered, but still alive.
I have 2 eye diseases which is Usher syndrome type 1 and Retinitis pigmentosa, will these diseases cause my eyes to be rejected for donors? Thanks for doing this AMA
No, in fact our researchers would probably be fascinated by your eyes and if you consented to research and education, you could help doctors better understand and treat eye diseases.
I'm an organ donor, but I've also been diagnosed with Lyme disease. Is it a bad idea for me to continue being a donor right now?
No, not at all. Never delete your status because you never know what may happen in your life. And in the end, people you are not registered have the same chance at being a donor as people you are registered.
Thank you for answering what I hope wasn't a dumb question.
No problem. This is an AMA, no question is dumb.
I do not understand that last sentence. Is that supposed to be:
" people WHO are not registered have the same chance at being a donor as people Who are registered."
Or is there some missing comma?
Yes, simple typo. Who, not you.
That's what I thought, but you seem to be saying the people who aren't registered might still become donors?
Yes, that is exactly what I am saying. Registering to be a donor is simply a formality - it can make things easier on your family.
A non-registered donor can still become a donor.
A registered donor can not become a donor.
There are so many things that change the entire process and a person's registration status is not one of them.
That seems. Wrong. Not incorrect, just morally wrong. Meaning if I don't want my body harvested, I get no choice? so opt in is really BS. we are all opt-in and can't opt out?
FYI: I'm not against people donating, and my issues with donating are complex, and, yes, emotionally based to help deal with the frustration that I won't live forever. That doesn't make them less real or valid
Since this is the internet, I want to be clear. I am not hostile, or argumentative, nor do I wish to deride you of your profession.
I totally understand your thoughts, seriously. I am not taking offense. I can put it simply: tell your closest family that you do NOT want to be a donor and you will not be a donor. Put it in your will - tell a legal representative. I wish we could have an opt-out program like some other countries, but this isn't a subject that people like to talk about so it will likely never be voted on or brought up by the people in power.
Have you ever met someone after they have received a donated organ?
Nope, it is a pretty confidential process, but I have heard some pretty great stories.
Can I donate my perfectly symmetrical nipples?
Only for personal research.
What are the most sought after eye colors? Do people who need an eye get to choose? Do they only try and get one that matches if they only need one?
Transplant doesn't involve the iris of the eye, only the cornea - so there are no colors involved or selected. Everyone's cornea looks relatively the same. We only recover the whole eye if for medical education and research.
Oh that's much less exciting :( Thanks!
Sorry to disappoint. But when looking at corneas, it is a wonderful example of how no matter who you are, we are all very similar.
Guessing that a scarred cornea is of little to no use?
Yeah, but we can always recover the other one. Or you could even become a recipient before you die.
What organs are typically donated? Does it vary from state to state? What is the time frame you have to make a successful transplant?
Typical organs: lung, kidneys,liver, heart. It varies from what doctors need at the time of death. Most transplants need to be completed within 24 hours after death - the sooner the better.
My family are all organ donors. My daughter has a specific request that her body be donated to science but wants her eyes to be launched into space (nerve issues, left eye is nearly blind). I never expected to be able to ask this to somebody who might know, so, is it possible to have her eyes launched into space?
Whew, that is a great question and an amazing idea. I have no idea, to be honest. This is going to sound weird, but hopefully when your daughter dies (many years from now), this would be an option. If you are interested in whole body donation, there are some amazing programs out there (look for non-profit ones) and have some fun exploring.
Any programs you would specifically recommend as getting the most value out of the remains?
I have my personal favorite, yes: http://fac.utk.edu/facilities.html
This type of body donation program was the first of its kind and there have been multiple books about it. It is often called the Body Farm and it helps solve crimes and helps us learn about what happens to the body after someone dies. http://fac.utk.edu/donation.html
I can't help but be repulsed at the idea of my body being experimented on, though I know logically that it doesn't matter to me, and is very helpful to the scientists. Is there anything I should know to put me at ease and encourage me to donate my body to science?
Research, research, research. Look for a great organization who specializes in what you are comfortable with. Make sure your loved ones know your restrictions. You can specify things, to a point.
Do more of the donations go to hospitals for health or research? does it depend on the conditions of the organs themselves?
Most donations go towards transplant. Research is typically used if we cannot use the tissue for transplant.
With cornea donations, what are some ways that the corpse can be made presentable for a funeral?
Well, we only take the cornea, so it often looks like nothing was done. Funeral directors will always keep the eyes closed and use makeup to hide and bruising that occurs naturally or even but some sort of padding under the eye lid in case the eye deflates after death.
With other donations, how is the body made to look presentable?
Well, people are fully dressed, so that typically hides everything else that will be donated. Usually only a person's face is visible in a viewing and the only thing donated on the face is a person's eyes/corneas. Long bones of the arms and legs are often replaced by PVC pipe in order to make the body easy to move and for clothes to fit as appropriately as can be. It isn't pretty, but death is ugly - we just try to make it pretty.
That's very interesting! I love to know the extent that people go to make the deceased look "normal" after these processes.
There have been a few funeral director AMA's that I think talk about that sort of thing, at times.
Based on everything I know* about people who work with the dead:
Do you solve crimes once a week, and what is your side kicks quirk?
*everything I know is from 70's and 80's TV shows.
I tell my coworkers to wear revealing clothing, we never turn the lights on unless we want our attention focused on a particular table or chair and we only work for 48 minutes every week.
Well done sir, well done.
Yeah, it's a weird job. Once a year - always around the same time - at the very end of the work day, we unexpectedly lose an employee and we don't work again for six months and we simply cannot wait to find out what happened.
Is there anyway to evade becoming an organ/tissue?
Tell your family that you don't want to be one.
Or start doing IV drugs - that always works for us.
May I ask the process? how do you guys do it?
When someone dies at a hospital, it is against the law for them to not report the death to us (re: Uniform Anatomical Gift Act). Once we receive a death report, we have full access to a person's medical history and we look to see if they are medically suitable to become a donor. Once we deem them to be a safe donor, we contact their closest next of kin and begin the paperwork. If someone refuses to help do the paperwork, then you can not be a donor.
What if you don't die at the hospital?
There is no legal obligation to report it to us. Some hospices know how we work and if a family or patient expresses interest, they can call us and start the process. Other times a medical examiner or 911 dispatch will call or fax us with a death if they have the time. Unfortunately the only thing we can rely on are hospital deaths, which is why telling your loved ones you want to be a donor (or not be a donor) is the most important thing you can do.
So, can I still be a donor if I don't die at a hospital?
Yes, but it can be difficult. The only way that can happen is if either you or your family are proactive and know your decisions before you die and know who to contact when you die.
Thanks, this helps a lot because I want to donate, but who knows where I'm going to die?
Exactly. Circumstances play a large part in being a donor.
Once we receive a death report, we have full access to a person's medical history...
How do you access the history? Is there a national database that contains everyone's medical records?
Through the hospital records. We have records to all local hospitals. Each hospital has their own records and some have multiple records if you have ever given them permission to retrieve those other records.
Why does doing IV drugs makes you incompatible as a donor?
Considered high-risk. The odds of an IV drug user having HIV and Hepatitis C is astronomically higher than someone who is not using IV drugs. We do not transplant tissue from people who have HIV or Hepatitis B or C. It is a generalization, I know, but it is also a FDA regulation.
OK I see, I thought it had something to do with that.
Do you STD test donors or is that too much of a hassle/expense?
We run serologies after people die, but only after we have recovered all tissues. Hospitals will test people for everything that they think the person should be tested for. Most STD's aren't an issue, but any positive test make our ears perk a little.
What's a serology?
Sorry, we will take blood samples and run tests on those samples.
Wait, what? I've seen people with hep c get a liver transplant. It's currently the most common indication for liver transplant.
I am not talking about the recipients. People who donate cannot have Hep C - a recipient can.
Huh. I've seen a hep c pos recipient get a hep c pos liver. I know they don't cross a negative recipient with a positive donor.
It would have to be a VERY specific request. Again, I have never seen any of this happen, but I have heard stories about it happening. I am often surprised about what the organ folks may take: they don't seem to care about bacterial meningitis or recent, lengthy jail time. For us and tissue, we back away from those two items.
Long shot if you're still around but why is lengthy jail time a red flag?
It's considered to be too high risk. The physical and sexual attacks are of most concern. Diseases run rampant in the prison system. It's not a certain thing, but concern enough for high risk exposure.
High risk stuff like history of IV drug use and things like Hep C will exclude tissue donation but it certainly will NOT rule out organ donation. It is up to the surgeons receiving the organs to accept based upon the med/social history. There are also separate lists for patients with Hep C waiting for transplant.
It is up to the organ procurement folks in that regard and not the surgeons. Yes, you can certainly be told, "hey, we have a heart for you, but it was from someone with hep C, you cool with that?"
I have never seen this happen, but it certainly can. Again, this is not the area in which I work. Every single time I have had someone with IV drug use or Hepatitis C, the organ folks stop everything.
I work in organ procurement. Many of our donors are high risk due to IV drug abuse and we have our fair share of overdose brain deaths. It really depends on the transplant center receiving the organs. We have some really aggressive and last resort centers who will transplant kidneys and livers which others would turn down.
Obviously we have to evaluate the big picture and organ function, but my first case was a Hep C donor and we recovered liver and kidneys. Another one had questionable IV drug use, and we placed everything but bowel. Recipients are definitely made aware of stuff like this, but sometimes it is "I will die and it is better then nothing."
There is a lot misinformation out there but research is showing good outcomes so far.
That's awesome. I wish I was more privy to what you folks do, but we are kind of kept at a distance. I had a feeling that a very specific request from a recipient/doctor could alter an organ procurement decision, but that is pretty rare. Just two days ago I had the organ folks rule out on someone with questionable IV drug use. But sometimes they rule out due to diabetes or hypertension. We never know, really.
Interesting. Everywhere is different I guess.
So in your area organ and tissue are completely separate? Do you have to approach the families separately?
Sometimes I get to meet people from other OPOs coming in for a recovery or if we're going out and I like learning how it works elsewhere but we're usually too busy with the case to chit chat.
We don't do separate interviews, but we don't really work together. They call us with very basic info, fax everything over and we just await OR and cross clamp times. I feel like both parties are just often annoyed with each other. But things get done and that is what matters.
What kinds of conditions and/or diseases would make you unable to be a donor?
For years, I have been against being an organ donor, but this AMA is certainly making me rethink my decision. I would like to know if I actually can donate now, but am worried because I have certain medical conditions and diseases.
The big rule outs are: HIV, hep b, hep c, recent jail time, IV drug use, etc. Systemic infections that can't be predicted are very common: sepsis, necrosis, endocarditis, bacterial peritonitis, etc..
Glad you have an open mind and feel free to ask me anything.
Tell us the most heartwarming story you know that happened to you at your job?
The first one that pops in my head was when I spoke to a wife who's husband shot himself right in front of her. I talked to her five hours after it happened and she said, "he had demons, but he was a great man who had beautiful eyes. I am so glad that someone else can now see through his eyes and that something good can come out of his death."
I am paraphrasing, a bit, but yeah, I hear that kind of stuff every few months and it is amazing.
Do you harvest skin? If so what are some of the typical uses? How do you decide which companies end up with the organs and tissues you harvest (I assume they don't go directly from you into the recipients)?
Yes, skin tissue is often taken from the lower backs and the front and backs of the legs. It is usually a single-layer, like the thickness of a piece of paper. It is often used to help burn victims: prevent infection, promote healing. I am not involved with any of the companies or surgeons that end up with the tissue - my job stops after recovery.
If someone were to die by suicide, are the organs still suitable for donation? If an autopsy is to be carried out, is organ donation still viable?
What if a heroin addict(or anybody really) dies of drug overdose/poisoning etc? Are the organs considered 'contaminated'?
You have a morbid yet meaningful job, and that's awesome :)
edit: oh, so the donor has to die in the hospital for it to be considered. oops, irrelevant questions.
People who commit suicide are still okay for donation. Eye donation may be out if you shoot yourself in the head, though. An autopsy doesn't rule someone out, either. We ask the medical examiner to draw blood for us and they provide restrictions such as stay out of the chest cavity.
Overdoses and poisonings are often looked at closely by medical examiners and they tell us if we can proceed with donation or not. Heroin use with five years of death rules you out for tissue donation.
So I have a question about what the body looks like after the eyes are removed. I once asked my father if he was an organ donor and he said he was against it quite seriously. My grandfather died in his sleep at home (so I was told) and my father was asked if he would like to donate my grandfather's corneas. My father said to me with a pained look on his face "we did a viewing and it looked like somebody had beat the shit out of him, Owlett5, I'll never forgive myself for letting that happen to him"
What he said and the look he gave me haunts me whenever I hear about eye donation. Is what he told me true? I am a donor myself, but I wish I could prove to my dad that the last thing he did with his father was save someone else's vision, not desecrate my grandfather's corpse.
Well, I am sorry that is how your father remembers your grandfather during the viewing, but makeup and overall skills/precision has advanced over the years - not including the advancement of tools and the training. Years ago, very untrained people were recovering corneas (including hospital staff and funeral directors), and now we have a trained staff that do them.
Bruising is very common after death and although we may contribute or enhance the bruising, it is the funeral director's job to make certain that the body looks as natural as can be. Most of the time, we recover corneas hours after death, but a viewing my not take place for another week or so. A lot can happen to a body during that week, and it is unfortunate, but a part of reality. I cannot say for certain that the person who recovered your grandfather's eyes caused the bruising or not, but in the end, your grandfather's corneas helped two other people see again.
Which eye color do you deal with most often?
I don't see color in the cornea - that is the iris. But often when I am looking through the documents, I read that the person had brown eyes.
Do you even think about the parts inside of living people? Does the idea that living people are just made up of parts which can be taken out excite/disturb you?
I don't really think about it. We aren't parts until we are dead, but that opinion differs depending on your beliefs. I don't think a person exists any more after they die, so yeah, in a way, they are parts for other people at that point.
I do see some people and I know they won't be able to donate certain tissues, such as morbidly obese people.
Strange, I've always heard that obese people often make some of the best donors because it protects organs from trauma.
It's not about that, really. It's kind of two fold:
1) A super morbidly obese person is often wheelchair or bed bound and therefore is in extremely awful physical condition, which leaves their skin and bone tissue in horrendous shape.
2) Most importantly: it is dangerous for the technicians. Our technicians aren't huge men capable of moving 400 pounds of dead weight - they are often regular folks including mothers, students, and retirees. We need to do a full physical inspection and that requires turning the entire body and many hospitals don't help with this.
Just curious - I'm already a registered donor - if I die and it turns out my organs / tissues are unusable because of HIV or some other potentially private health condition, what would my family be told?
Nothing. We would never contact them. We try to never contact a family unless we are certain someone can be a donor.
So if they asked a doctor, "She wanted to be a donor, why aren't they harvesting her organs?" do you know what the doctor would say?
Doctors, for the most part, have no idea what can allow someone to be a donor. We are trained to know everything about donation and doctors aren't. They can only assume. If someone is not on a vent, that is a pretty good reason as to why they aren't an organ donor. If a person has a systemic infection, HIV, Hep C, etc., that is also a pretty good reason why.
Ok, I did agree to be an organ donor when I die but I have a question about the paperwork. I have no contact with my family for the most part so what would happen when I die? Can they just get going or would I be passed by because it would take so long to reach my family?
Well, we have next of kin hierarchy:
Anyone with the authority to make decisions or took care of the decedent.
We go down a list. If all you have is a friend or neighbor, we can do paperwork with them - but they have to be willing to do paperwork and have some set of knowledge about your life.
Yes, typically the cut off for transplant donation is between 75 and 80. But who knows, that could always be lengthened in the future. In just the few years I have been working in this industry, the age has been extended by five years.
I'm an estate planning lawyer. What can I do for my clients to make it easier for them to donate?
Tell them to talk to their loved ones about whether or not they want to be a donor after death. A person's most legal next of kin has the final say so in regards to donation. Paperwork is required for someone to be a donor and this is a fact that is not known by most people. Great question! Thank you.
Do bodies get sent as med school cadavers?
Sometimes, for sure. Physical therapists need practice, too.
I'm a melanoma survivor. (two times, stage 1 both times) Could I donate?
Congrats! And yes, you can. Stay outta the sun or wear suncreen.
Are you a donor yourself? And do you advocate to your family becoming one?
I hopefully won't be a donor for at least 40 more years. But yes, I am registered. I don't advocate to anyone, really. People have the right to make their own choices, I just provide information. I would like everyone to be a donor, but people have their own feelings about it and I cannot alter those.
My father died when I was young and I was told he donated his body to science; is this the same sort of thing as tissue donation? He (ab)used lots of different substances - suicided in 1996 when he tried getting off of them. Reading some of your answers I would think it would be deemed 'unsafe' for transplant - but okay for anatomy and science I guess? If that was the case - how would that work?
Well, using drugs does not prevent you from being a donor - doing drugs in a certain way do: with needles. Smoking meth or snorting crack: no problem. Shooting heroin: big problem.
Donating your body to science is different than being a tissue donor. Tissue donors go to help improve the lives of other people, such as skin for skin grafts and long bones to help with bone cancer resections. Whole body donation is often meant for education. I would look up local whole body donors and see if you can find out where your father went and perhaps there are records that you may have access to. Best of luck and sorry about your father.
What kind of things count as 'tissue'?
I've heard multiple people talk about being freaked out by the concept of 'eye' donation (as in I know several people who are signed up as organ donors, but specifically opt-out of cornea donation). No one seems to realise that it's only the corneas that are donated/don't seem to know what corneas are. Do you often come across this misconception in your line of work?
Long bones of arms and legs
Ribs, Costal Cartilage and Pericardium
Yeah, people have a sensitivity to eyes that surprised me when I got this job. Usually people just hear "eyes" and not "corneas." You are correct in that for transplant, we only take the cornea, which is basically the size of a contact lens; it is the focusing element of the eye.
What people are not realizing is that when you sign up to be a donor, you are not signing up to only be an organ donor - you are signing up to be a donor, period. This doesn't mean that you will be, but you have given first person consent that you want to be.
Guess it's not weird to ask and it may have been asked before, but even if you're not an organ donor can you still end up donating after passing if the need is there?
I only ask cause I'm not one, but if I'm gone and by chance it's not a crazy way to go would there be a possibility of still being thrown into being a donor?
Yes, you can be a donor regardless of if you are registered or not. But if you are just asking about being an organ donor, yes, you can still donate eyes and tissues if you are rejected by the organ folks. Very few can become organ donors; it is much easier to be an eye and tissue donor (organ folks have a lot more restrictions and particular needs).
So I'm a registered donor and I have read all the answers about telling your family what you want to do with your body. Can they act like jerks and refuse to allow my bits to be donated to someone that needs them?
Yes, they can. Which is why people need to talk about donation. You need to make certain that the decision maker in life is someone you trust. The problem occurs because we have to talk to families just hours after they lost someone, so they are occasionally angry we are calling so soon and refuse to talk to us - but we HAVE to call early because, to be honest: their loved one is decomposing.
Do you believe legislation in the US should be passed that only people that are registered as organ donors can be recipients of organs?
No, I don't think that should be passed. The reason many people aren't registered is because they don't have the facts about donation and therefore they don't register under false pretenses.
Gotcha! Well love what ya do! Hopefully more people will embrace organ donation.
Thanks! I hope more do, too.
We don't really have an opt-out system, which is a shame. But people can say no to any particular tissue and I think the most common would be the heart because of the symbolism that the heart provides. People just aren't comfortable with that, sometimes.
So it's in your best interest that I die?
Creepy. That's why I don't have an organ donor card.
No, I have job security regardless of whether or not you are a donor. It's my best interest to do my job and it is in the best interest of the doctors to try to save you.
You can still be a donor even if you aren't registered. The only creepy thing is thinking that it is creepy and not a reality.
In my defence, something can be creepy and a reality.
"best interest of the doctors to try to save you."
well, that leads down a philosophical rabbit hole. It the doctors responsibility to save lives. So if harvesting one person organs in order to save 3 lives the right thing to do?
The only almost convincing reply was, in essence, was 'I'm too busy saving the life in front of me to worry about others.'
But it occurred to me he had a lot of other time to think about it.
The person who is dying to save three other people is going to die. There is no doubt about it. They will be dead the moment the hospital stops caring for them.
So the choice is this: let them die and potentially let the three other people die, or talk to their family and have them donate multiple organs to save the other three.
There doesn't seem to be much of a philosophical rabbit hole to me, but to each their own. You are certainly allowed to disagree.
My eye prescription is -9.50. Would it even help someone?
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