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 three of these already, so feel free to look at them. Perhaps I have already answered your question on one of them:

http://www.reddit.com/r/IAmA/comments/2i0prb/want_to_donate_your_eyes_andor_tissues_after_you/

http://www.reddit.com/r/IAmA/comments/299nhr/i_help_decide_whether_or_not_someone_will_be_an/

http://www.reddit.com/r/IAmA/comments/1rp3lc/iama_anatomical_donation_coordinator_and_i_am/

Edit (1515 PST): I am still answering!

Edit (1700 PST): Guess that is all folks. If you actually have anymore questions, feel free to ask me. I will respond when I log back in again. Thank you all.

Comments: 372 • Responses: 112  • Date: 

RamsesThePigeon56 karma

For most of my adult life, I've considered the prospect of donating my body to science when I die. There are, however, a couple of items on which I'd like some more information, and I'm hopeful that you can help me:

  1. If I do donate my body for scientific study, would any viable organs and/or tissues still be able to make their way to people who need them?

  2. What is the likelihood that I'll be able to have my brain removed at the time of my death and kept alive in a special container that's attached to pieces of sensory input apparatus and possibly an Internet connection?

  3. In the case of that second eventuality, what guarantee do I have that a graduate student won't try to poke me with a stick?

sleeptrouble124 karma

1) Typically eyes only. Most whole body programs want the whole body. They often allow us to recover corneas, but that is it.

2) If you died tomorrow, unlikely. If you die in 25 years, I am gonna give it a 51% chance.

3) There is no situation in the world that can prevent a graduate student from poking you with a stick - dead or alive. They are an odd bunch.

BrachiumPontis99 karma

Grad student here. Can confirm, would poke a brain in a jar.

sleeptrouble37 karma

So would I!

geeky_username11 karma

1) Typically eyes only. Most whole body programs want the whole body. They often allow us to recover corneas, but that is it.

Sorry if you have answered this before.

What would be the most "good" to come from my body. I want something useful to come of my body. When I was in college I went into a cadaver lab for study and ever since then I've wanted to "give back".

Im already and organ donor, but if you say whole body programs want the whole body - where can I do the most good?

  • Individual parts donations to save people's lives
  • Whole body programs
  • Other science donations?
    • Are there programs that just want a brain, or will take partial after-organ donation bodies?

sleeptrouble13 karma

You have to find a whole body program that will be okay with you donating tissues beforehand. Not sure which programs those would be, but that is your best bet. A typical tissue donor can help up to 50 people - a typical whole body donor helps up to countless doctors and scientists, so it is up to you which is more important. I think that you are a great person either way. And yes, there are programs who just want the brain and they will take it after the organs and/or tissues have been recovered.

supermaja9 karma

Why does the donor have to do this legwork? Do we have such an oversupply of organs and tissues that the system can afford to risk people not donating because they didn't want to research this?

This makes no sense to me. I have always intended to donate my organs, but I am troubled by the possibility that my body would be cut up into pieces that people will sell for profit. I find this disturbing. So disturbing that I am now considering just a green burial with a tree planted on the spot. I haven't decided yet, but I'm considering. I just don't have the time to do the legwork, and I sure as heck don't know which info is reliable.

sleeptrouble6 karma

The donor doesn't have to do anything, so I am not sure what you are referring to. The only legwork that I can think of for the donor is: talk to your family and then die, as awful as that sounds. I cannot think of anything else. Maybe try to life healthy. Please help me understand what legwork you are thinking of that creates such a burden on the donor?

All things considered though, I do love the green burial idea.

supermaja4 karma

Sorry, I mean the legwork to decide what program to will your body to. I live near a Big Ten university and they have a their anatomic donor program, but I don't know anything about how to guarantee your body is disposed of according to the donor's wishes.

As I indicated, I wouldn't want to have some body parts rep come and take my ligaments or other body parts. I would want to know exactly where I would end up (and how to legally ensure that), and I would want to have options re: how my body is used.

I love the green burial idea too! So, for example, one of my desires would be that they take whatever can be of direct value to a patient, then let the anatomy lab at the university have pieces, then get the rest to bury and plant a tree on. Reuse, recycle.

sleeptrouble4 karma

Oh, ok. Yeah, whole body donation requires donor legwork. Transplant donation doesn't require any legwork. When whole body programs start looking for donors, shady things start happening and that is when you read stories about whole body programs being investigated for a variety of things.

When I talk to families, one of the things we ask are about restrictions. They can say things like, "I want him to only go to non-profit organizations" or "remain in the state of Indiana" for example. Now this limits you significantly, but it is legally-binding and would prevent you from being all over the world in bits and pieces.

fitzman8 karma

..For real though with #2? Meaning I, as well as most redditors under the the age of 30, may actually have the option of artificial life support for our brains past the death of our bodies? Eerie thought..

sleeptrouble12 karma

Oh, I have no idea. I wouldn't put it past someone with money to create something like that. Never put anything past a person who has enough money to do anything.

mindscrambler2626 karma

Do you ever hear anyone say to you, "I'll keep an eye out for you!"?

sleeptrouble35 karma

Yes, we often say a lot of puns (I am the worst - I often say "aye, aye")

Slaytounge26 karma

That is the worst.

sleeptrouble52 karma

Well, I never said it was good.

MethaneBased15 karma

How important is it that I sign the back of my ID? My five-year-old Wisconsin ID has "DONOR" printed directly on the front, yet still asks for my signature on the back.

Do donor opt-in procedures change from state to state?

sleeptrouble25 karma

State-to-state, I don't believe so. The signature doesn't matter at all. Having "donor" on your card does nothing more than to help your family out with the decision.

When someone dies, if we find them to be medically suitable, we call their next-of-kin to complete paperwork. If you have "donor" on your license, we are legally obligated to tell your loved ones that you WANT to be a donor and we need their help. If you do not have "donor" on your card, we still call your family and we simply ask if they think their loved one would have wanted to be a donor. If they say no, we thank them for their time.

Basically, we have to have your families help before you can be donor regardless of whether or not you have "donor" on your card.

banginthedrum14 karma

[deleted]

sleeptrouble15 karma

The point of the registry is for your family to know you wanted to be a donor so they don't have to make that decision. Your next of kin must be contacted regardless because they have to fill out paperwork, including an interview about your medical and social history (the questionnaire is nearly identical to the blood donation questionnaire).

And major props to you for being so damn proactive!

banginthedrum13 karma

[deleted]

sleeptrouble10 karma

Yes! Exactly. When someone isn't registered, the family must make the decision and must make it within hours after the death - which is such a huge burden on them. Being registered simply lifts that burden from them. All they have to do is take 30 minutes and fill out the necessary paperwork.

banginthedrum9 karma

[deleted]

sleeptrouble8 karma

I wish we didn't have to involve them, but part of the paperwork is asking them questions about their loved ones medical and social history. The social history is the important part because hospitals often don't know this info: travel history, sexual history, etc. It is amazing what can come up during an interview that only a person's loved one would know. It is necessary about a person cannot be a donor without that interviewing being done - just like you cannot donate blood without answering some questions.

pookyjo29 karma

My mom passed in May. I sat with Dad for the interview. The rep was amazing. Knew just how to ask the questions. So supportive. Thank you.

PS the social history questions were awkward. For me LOL.

sleeptrouble3 karma

They are awkward, I know! Sorry about your mother, but I am glad you were both there to help her become a donor and continue on. Your mom is still out there, helping someone else.

zize2k9 karma

Hmm, could we not just have reddit make some public key you can print on your donor card along your reddit nick, and when we die you see my reddit account name and my public key, then you enter those and reddit verify my lack of travel and sexual history?
brb coding this feature.

sleeptrouble8 karma

Excellent idea. Reddit is clearly not utilizing its potential. Someday a redditor's history will stand up in court.

saracuda14 karma

You guys called my mother at 4AM the early morning after my brother hung himself on Christmas Eve to talk about cornea and tissue harvesting. I hate you for that, but I'm simultaneously glad that he wanted to be a donor and possibly help others.

Do you guys get a lot of people like me (angry at you for calling at such a time) on the phone when you have to call within the time limit, often close to the time of death when we're still in anger and disbelief and/or grief?

sleeptrouble22 karma

I am so sorry that you had to experience that and that is truly the worst part of my job. I can promise you that the person who called you felt awful and carried it with them for a long time. We don't forget angry families. We never want to bother anyone, but I am glad you took our call. We typically have to call a family within 12 hours after someone dies.

We get quite a few people who are angry and yell, "don't you know what just happened??" and they don't know that yes, I know exactly what happened (sometimes I know more than they do because I talk with the doctors), but grieving is a horrendous process and if someone needs to yell at me, then they can yell. In the end, if your brother wanted to be a donor and we didn't call, then we wouldn't be respecting his wishes. I am sorry about your brother, but I am glad he was able to help someone else.

saracuda13 karma

Thanks for answering - his girlfriend's father was saved by a liver transplant, so I think all of our family deep-down was understanding despite it hurting so much. We appreciate the hard work you and your co-workers do, we just wish it didn't need to be done so soon.

Thank you for what your doing.

sleeptrouble10 karma

Thank you for being understanding. And thank you for the nice comments. An angry next of kin who eventually thanks me is one of the best feelings.

honeybadgergrrl13 karma

Regarding eyes: even though I have the donor box checked on my drivers license, there is something that really, really weirds me out about the thought of someone walking around with my eyes. However, I have horrible eyes - astigmatism in both, terrible near-sightedness, retina degeneration caused by ocular histoplasmosis, hyper sensitivity, the list goes on. What is the likelihood that some poor bastard would be stuck trying to see out of my eyes if something happened to me?

sleeptrouble13 karma

It's not the whole eye that is transplanted - only the cornea. And your ocular pathology sounds interesting and wouldn't cause a problem with the recipient.

Kaydotz4 karma

Are there any eye issues that would make them unusable, aside from the harvesting time limit or any trauma/damage?

sleeptrouble13 karma

Some big ones are: HIV, High-risk activities like using IV drugs, sleeping with prostitutes, etc. Also certain travel times in Europe in the 1980's.

High_Stream3 karma

I lived in England for six months in 1987. Does that rule me out for organ donation like it does for blood?

sleeptrouble4 karma

For now, yes. But I think that will change in the future.

ScrdMnkyDst3 karma

I'm from England and I was birthed at around this time, so my question is, why does this count people out for donation or blood and organs?

sleeptrouble11 karma

High risk of Creutzfeldt–Jakob disease (or one of the human forms of mad cow disease). Biggest risks were in the 1980's and early 90's.

WWLadyDeadpool13 karma

Are there any weird things we wouldn't expect that might keep our tissue from being used?

Would being in a persistent vegetative state for a year trash anything?

sleeptrouble28 karma

Persistent vegetative state would prevent you from being a tissue donor, most likely due to the destruction of the skin/bones. But you could still be an eye donor.

Weird things that may prevent you from being a donor: Not having any family to contact. Dying in a remote location around a holiday. I think those are the weirdest things.

Rikvidr27 karma

Note to self: Don't die in the mountains on Christmas.

sleeptrouble35 karma

Good plan. I would suggest not dying in the mountains at all because most mountain deaths sound terrible.

ThatGuyGetsIt22 karma

I would think that dying while you're high would help take the edge off.

Take that pun master!

sleeptrouble13 karma

Nice. Hadn't heard that one, actually. I made up a joke once:

What did one cornea say to the other? I see you.

gak00110 karma

That's absurd - corneas can't talk.

sleeptrouble15 karma

Have you ever heard one talk? No? That is because they are really good at it.

kellhusofatrithau12 karma

Have you ever "harvested" the organs of someone well-known?

sleeptrouble25 karma

Nope. And even if I had, I couldn't say so: HIPPA violations.

TakingADumpRightNow9 karma

[deleted]

sleeptrouble16 karma

Nope.

boazdm2 karma

HIPAA*

sleeptrouble2 karma

Whoops. Them too.

sylvatron12 karma

I had someone tell me recently that because I have 'Donor' on my ID, I will pretty much be murdered and sold off by EMTs if I'm ever in an ambulance (Their response to my look of disbelief was, "It happens. My mom's a nurse and she told me!"). Please give me all of the proof I need to convince this person they are living in crazy town.

sleeptrouble30 karma

That is bullshit and as illegal as it gets. EMT's have ZERO knowledge of the donation process (unless they did my job at some point) and they don't have the legal paperwork to do anything. Every single donation is overseen by the FDA and there so many laws and regulations that must be followed.

Another reason why this won't happen: it doesn't matter if you have "donor" on your card if you have AIDS or some sort of viral meningitis or something. It is my job to analyze your health and your records in order to deem you safe to donate.

Need any more? I could talk about this for days.

sylvatron5 karma

Thanks, I'll bring that up if we ever talk about it again. It was a good friend of mine who said it and she's not stupid. We were all really shocked when she said it.

sleeptrouble5 karma

I know I am not your friend like she is, but trust me when I say that it cannot happen...not legally, anyway.

sarahtheangrymidget9 karma

Have you read the book "Stiff: The Curious Lives of Human Cadavers" by Mary Roach? It was assigned reading at my university and a wonderful insight to the different realms of donation.

10/10 would recommend for a both interesting and informative read

sleeptrouble3 karma

Yes, I love that book and I can see it on my bookcase right now. I also loved her books: Spook, Gulp, and Packing for Mars.

podini8 karma

I have a mortician friend, and he and all of his coworkers are in complete opposition to organ donation citing that what the bodies go through is basically human mutilation. I was previously in favor of donating, but after hearing that a lot goes to waste, bodies are ruined from the chin down and PVC pipe is used to replace bones to look like a body for the funeral I have had some second thoughts. How do you feel about the procedures used for obtaining donated organs/tissues? After witnessing what happens to bodies, did you have any second thoughts about donating yourself? How much of donated bodies are actually used? Thanks!

sleeptrouble22 karma

I have no second thoughts, but your mortician friend isn't lying, to be honest. The bodies are cut open like an autopsy which is pretty damn gruesome, but that is simply what it takes. PVC is put in place of long bones in the arms and legs in order for the body to appear "whole" for a viewing/funeral. The process sounds bad, but the people who are doing it are caring people who are very pro-donation.

A "typical" donor donates the following: corneas, heart valves, skin tissue (taken from the lower back, usually - no thicker than a piece of paper, long bones of the arms and legs).

wibble99003 karma

What are the long bones used for?

sleeptrouble3 karma

Typically used for spinal and cervical fusions and help with bone cancer resections.

Bdag8 karma

Is staring intimately in to your lovers eyes difficult for you? Like how gynos are put off by vaginas?

sleeptrouble32 karma

Not anymore than staring into their vaginas.

TheMuslinCrow8 karma

I have a rare neurological disorder (Tourette's Syndrome), and signed up to donate my brain to Harvard. I'm also an organ donor. Which takes precedence when I die (how do they divvy up the bits), in other words, will my brain donation prevent my other organs from being used for transplants?

I read the information online, but it only says that "Brain donation does not preclude you from donating other useful tissues such as bone, corneas and skin, but it may not be possible to donate certain other organs."

Also, sorry, but can't resist: This ensures at least part of me will go to Harvard.

sleeptrouble5 karma

No, typically the brain is taken after everything else is done; the organizations will be talking with each other in regards to recovery times and locations in order for everything to go smoothly.

Hey, when I went to Boston years ago, I went to Harvard just to call my Mom and say, "Mom, can't talk now - I'm at Harvard."

boy-with-apple8 karma

What happens if a body part gets rejected? Is it given back to the family before burial, or just discarded?

sleeptrouble12 karma

It is discarded. I wish we could give it back, but it just doesn't work that way. Plus, most people in this day and age are cremated, so their bodies are long gone before we even know if something will be rejected. But don't worry, it is discarded safely and humanely.

TheRealMcCoy954 karma

How would it be discarded, and what would cause a body part to be discarded?

sleeptrouble12 karma

Typically disposed of by OSHA (Occupational Safety and Health Administration) standards which prevents disposing into landfills with garbage. It is a state-by-state process with different methods, overall. My understanding is that there are landfills composed of nothing but medical waste.

TheRealMcCoy9514 karma

Hmm thats pretty damn nasty. 10/10 would not work there.

sleeptrouble6 karma

Yeah, I don't really know anything about those places. Doesn't sound nice. But it has to be done.

TheRealMcCoy955 karma

So what made you want to be in the field you're in today? One day did ya just wake up and be like yea i wanna take out organs from dead people! :D

sleeptrouble7 karma

I believe in what I do, but I also just graduated college at the same time that a position opened up. Good timing and an interest in the field.

TheRealMcCoy955 karma

Are you an organ donor?

sleeptrouble24 karma

Not until I am dead, but yes, I am registered.

trainspotter14 karma

Do they not just incinerate them? That would seem more logical and probably save have some real nasty jobs

sleeptrouble3 karma

It's possible. It is a state-by-state thing. Perhaps some states do that. Makes sense to me.

Askmehowigotthisname6 karma

I tried to donate my body to the Plastination Society but they wont accept any more bodies because of how many they already have to be donated...i live in Canada and am already an organ donor but i want as much of my body to be used for science or something useful as possible, is there any other place to donate my body that will actually accept it?

sleeptrouble12 karma

My favorite whole body program is: http://fac.utk.edu/donation.html

The man who started this program is the first person to ever create a "body farm." Basically, they put donated bodies into different environmental situations and analyze what happens to the body (what decays first, which insects come at what time, etc.) and they use this information to understand how long someone has been dead and perhaps even solve a crime. Death's Acre is a fantastic book about it.

But there are many whole body programs across the country that may have spots. I would just keep looking.

mlels6 karma

I have/had really bad endometriosis, a partial hysterectomy, and Fibromyalgia. My insides are a disaster yet may be interesting to a certain group of scientists. How can I find out if anyone specific wants my dead body and how do I get it all divvied out?

sleeptrouble7 karma

Contact local whole body programs, but just so you know - nothing of what you told me would prevent you from being an eye and tissue donor.

body_expert5 karma

How did you end up in the position you are in? Did you know this is what you wanted or did you end up with it. Are you happy? Sounds like a seriously awesome career.

sleeptrouble4 karma

It is super stressful and can be very frustrating, but I love the process. I love the detective work that must exist within it. I enjoy talking to families who understand the situation. My background is in Criminology and Communications and I just sorta fell into it. We are hiring, btw.

bee-factory2 karma

[deleted]

sleeptrouble2 karma

Well, the typical person is fresh out of college or looking to get into the medical field. It is a 3+ month training process. You have to be very detail-oriented, compassionate, and calm.

somesortofrobot5 karma

[deleted]

sleeptrouble3 karma

I work with NDRI from time to time. Most people don't realize this and it is the most frustrating part of the job, sometimes. Technically, the Transplant Act of 1984, says that it is illegal for someone to say no if you are registered, but the loophole is you can refuse to cooperate.

somesortofrobot2 karma

[deleted]

sleeptrouble5 karma

Research consent is probably 80%, but that is a guess. It's pretty high. People are uncomfortable agreeing to donate the long bones of the arms and legs.

somesortofrobot3 karma

[deleted]

sleeptrouble7 karma

Yes, it is hard to find minority donors. There are certain organizations like Donate Life who are trying to get into schools and educate low-income and minority children and parents about the benefits of being a donor, but it is a long, long process.

somesortofrobot3 karma

[deleted]

sleeptrouble4 karma

I work with them, not for them.

I speak with them on the phone because we operate all over the entire state and cannot be in every hospital. All of our phone calls are recorded for legal purposes, so we can do everything over the phone.

monovar5 karma

Is your organization an NGO, and if not how does it operate?

Do you have any concerns over false positives for donors ie; not actually dead?

What reading have you done into the illegal organ trading that has gone on in Europe and are you aware of anything similar in the US?

I am Australian and due to the short comings of our medical system have made it clear to my family that I do not wish to donate anything in the event of my death.

sleeptrouble5 karma

We are a non-profit organization that relies on donations and private funding (as to my understanding). Any profit we end up with goes back into the company and employees (holiday bonuses and whatnot).

Very minimal concerns. Just a few weeks ago the hospital had a patient dead for an hour and his parents were saying their goodbyes when he woke up smiling. That freaks us out, but I have never heard of someone not actually being dead by the time we get to them.

I honestly stay away from anything about organ trading. The subject makes me angry, so to prevent my blood to boil, I avoid it. But I still keep my ear to the ground and I honestly haven't heard anything about that happening in the U.S. There are some profit-based whole body donation programs who are under fire for doing some shady things, but I don't know what those things are. We try to refer people to non-profit whole body programs.

That is your choice and I am glad you have told your family.

JRoch5 karma

Is it true that if I'm overweight, you guys won't even consider my organs?

sleeptrouble12 karma

Yes, a certain BMI prevents someone from being an organ or tissue donor. It is more of a logistical thing - can't fit someone on an operating table safely, can't transport them safely, etc.

sorry_wasntlistening4 karma

How long after you die would an organ be taken?

sleeptrouble14 karma

For organs, you are technically still alive - just brain dead. They cannot remove any organs for transplant if you are dead (cardiac death). As for eyes and tissues, we have up to 24 hours after death to start the recovery; we hope for less than 12 hours after death, though.

ironichaos8 karma

Why can you not remove organs for cardiac death? Do the organs become useless when not supplied with a blood flow? I assume the eyes and tissues last longer even when there is not blood flow to them? Thanks for the AMA, really interesting stuff here.

sleeptrouble5 karma

Yes, that is correct. Corneas are even more different than any other part because they aren't connected to any blood supply, meaning that even with cancer, you can still donate your eyes.

sorry_wasntlistening3 karma

Is this why you specialize in eyes and tissue? Does it take more of a hospital related worker to deal with other organs?

sleeptrouble5 karma

It is just a different organization. I happen to work for an organization that handles the eyes and tissues. Organ donation is far rarer (in my state, maybe 1 donor a week...maybe; we average 4 eye donors and 2 tissue donors a day).

TotenSieWisp2 karma

I imagine most people would die from accident or disease or old age (organs failure/old organs).

I can't imagine that there will be a lot of healthy body patient that is just laying brain dead on the bed with life support attached. Like patient with blood clot in their brain or received enough blunt force trauma to permanently messed up their brain.

By brain dead, do you mean patient that had some brain problem and been hooked to a life support system for some time? Or someone who is just barely alive (beyond help/matter of time) or just passed away from an accident?

In what situation would the patient typically be when you collect the organs?

sleeptrouble4 karma

Most common times I see organ donation take place is after an accident: motor vehicle, skiing, skateboarding etc. Sometimes even after a fall like off of a ladder or on a slippery sidewalk.

The person will be intubated (on a ventilator) throughout the entire process.

Triplesfan4 karma

Have you or ever witnessed someone harvesting organs and tissue from people who never filled out organ donor cards?

sleeptrouble8 karma

Yes, many times, but NEVER without a family's consent. Just because you don't have "donor" on your card, it doesn't mean you cannot be a donor.

gekkevrek1234 karma

If your eyes are treated with lasers can you still donate them? Sorry for bad english

sleeptrouble4 karma

Yes, laser surgery wouldn't prevent anything.

jellybean_rot4 karma

I know this isn't your job specifically but maybe you know the laws behind all of this. Let's say I want to keep the jawbone of someone and that someone gives permission that after death I can have it, how would we go about that and do you know if it's legal anywhere?

sleeptrouble4 karma

I don't think you have any legal way of doing that, unfortunately. We don't ever take a tissue that we aren't trained to take.

BillyMarcus4 karma

My SO has a problem with me being a donor because if something happens to me she feels that I'll be immediately harvested and she won't be able to see me one last time (her biggest issue is with skin and eye donation).

Is it common for donors relatives to see them before they're harvested due to the time sensitive nature of it? Can you guys make me look good as originally dead so they can see me after I've been harvested?

sleeptrouble9 karma

We work with funeral homes in order for viewing to happen. If the viewing is scheduled three days after the death, the donation has to happen before it or not at all. Visually, a loved one should not be able to notice anything - that is our job and the funeral director's job. Typically only the cornea is taken and the eyes are closed. Nothing else in the face is done. Skin tissue is typically taken from the lower back or the backs of the legs. Never from the face. We can only make you look as good as you can look.

OtterCreek3 karma

How common is it for recipients of organs to meet the family of the deceased? I am the family of the deceased and would really like to meet the recipients. We designated as such on the forms.

sleeptrouble3 karma

Not typical, but not impossible. Both the recipient and the family have to agree to it because the whole process is very confidential.

OtterCreek3 karma

is it that most recipients don't want to meet the family? I wish there was a way to encourage this, I think it would really help our family a lot. thanks for your answers

sleeptrouble4 karma

You're welcome.

I am not sure why they don't meet, to be honest. I would love to meet a recipient or donor family if I was involved somehow. I think it may just create too many emotions. I watched a video a few weeks/months ago when a family who lost their son, I think, met the man who got their son's heart and they listened to his heartbeat knowing that it was their son's heart. Wow. Amazing stuff.

Found the video: http://www.wilx.com/news/headlines/Heartbeat-Lives-On-284348261.html

Ha. With a bacon ad before it

OneHumanLife3 karma

you can speak to the dead?

sleeptrouble7 karma

They never listen.

callc923 karma

How do you match organs to the people who need it? How long does it take from person A dying to person B receiving the organ? And finally, what are the best and worst parts of your job?

sleeptrouble5 karma

I don't work with the organs, so I am not sure the answers to those questions, sorry. I have been told blood type does not matter in some cases, but does matter in other cases.

Best part: hearing a mother sobbing with happiness that her daughter's death can help a baby born with a birth defect.

Worst part: angry people telling us that we are evil and that what we are doing is illegal (it's not, but we have to let them vent - it is a part of the grieving process, sometimes). Morale can get pretty low when you deal with such hatred and anger, sometimes.

badf1nger3 karma

Do you feel that if there were fewer organ donors, there would be a bigger push for stem cell research - specifically for growing replacement parts/transplant tissues?

sleeptrouble2 karma

No, I don't think that would change anything because there is already a HUGE push for stem cell research - even growing their own corneas. Weird shit, really.

bozobozo3 karma

As an organ donor, do I have any say in what way my corpse is used?

sleeptrouble3 karma

Tell your family and they will tell us.

PM-ME-OR-NOT3 karma

In what situations are eye transplants used for?

Can a blind person get eye transplants to be able to see?

TheGarp6 karma

Chiming in: things that have caused scarring of the cornea or sclera: trauma or other diseases that cause cloudiness or mis-shapes of the cornea.

The cornea is actually the most refractive tissue in the eye, more than the lens even.

If someone is blind from a clouded cornea, a transplant can absolutely let them see. In this country that is not a big problem because corneas are rather plentiful and we do not suffer from many of the diseases that can cause this problem. However there are many other countries who have children and adults with opaque corneas who can absolutely be restored to vision with a cornea transplant.

Most eyebanks who have surplus corneal tissue send them overseas gratis for this purpose.

sleeptrouble2 karma

Thank you

sleeptrouble4 karma

Completely blind, no; but mostly blind, yes. We give people the ability to see with cornea donation. I think in a few years, we may be able to have everyone see again.

BrachiumPontis3 karma

For issues with the eyes, sure. Issues with the primary visual cortex or optic tract? Not so easy.

sleeptrouble2 karma

True, but with science - you never know. They are working on growing corneas out of a lab right now.

BrachiumPontis3 karma

The problem with PVC issues is that you can't transplant in a new one or cut out the parts that aren't working. We've made huge steps, but when it comes to treating the brain, we might as well be cavemen.

Source: background in neuroscience and current researcher (in a different field).

sleeptrouble2 karma

I agree, but this type of stuff is above my pay and I don't know much about it.

vdk133 karma

Could I legally disown a relative of mine in my will for refusing to assist in my organ/tissue donation. I am registered as a donor and I have made it more than clear to my relatives that if they were to refuse my body being used for donation I would hunt them forever. I just wondered if I could actually have a case in my will, or does doctor-patient confidentiality prohibits you to disclose the reasons for not donating?

sleeptrouble6 karma

Well, you cannot disown someone after death, so I don't know how that will work. You can designate someone to be your legal, end-of-life, power of attorney, medical decision maker and that way we would contact them rather than anyone you think may say no. We have no access to a person's will, so we go on medical records and if a sister is the main contact, then we call the sister; if she says no and we tell you that this is what you wanted and she still says no, then we close the case out. Does that make sense? It is pretty rare for someone to say no when you have made it clear you want it to happen.

vdk133 karma

Totally makes sense.

Maybe I was a bit unclear in my explanation;

  1. I create a will next week (still alive)
  2. In the will there will be a clause that any family member who refuses to cooperate with the donation forfeits their part inheritance (would be fun to make that in favor of an organization like yours)
  3. I die in a car accident in a few months
  4. You guys contact my sister, she refuses the donation
  5. My body will not be used for donation

so far so good..

the question: will any attorney/notary be able to find out that my sister is the reason the donation fell through and therefore she forfeited any part of my inheritance

sleeptrouble3 karma

No one but us will know who declined donation - it is confidential. When you die, we will contact who YOU have requested we contact and we operate on a good faith system that this person is the most legal person to complete paperwork with. You can have in your medical chart that there are certain people you do NOT want contacted. If you want your sister out of the situation, then it needs to be written down as a part of your medical record.

We operate on good faith. If someone says they are the medical POA, we don't question it, we accept it. We don't ask for proof.

Does that help?

vdk133 karma

yes, thank you! I thought I figured out a loophole, but alas!

sleeptrouble3 karma

Technically it is illegal for them to say no, but they can refuse to do paperwork. In that instance, they can just say that someone else can do the paperwork.

BunsOfAluminum3 karma

What kind of people are you not able to use organs from, barring the obvious heart-was-sliced-in-twain? Can you use organs from big, fat people and way-too-thin people? What's the cutoff for fat and skinny? Can people with diseases still donate organs (obviously something like HIV is out, but what about diabetes)?

What's the coolest/most helpful thing I could have done with my body once I'm bereft of life?

sleeptrouble10 karma

Weight plays a HUGE factor in being a donor. When you start getting over 350 pounds, we start having some problems. Most of it is logistical and becomes a safety hazard for the folks involved, but obvious health problems occur with heavier people. Diabetes can alter organ donation, but still be okay for eyes and tissues. Oh, and being way too thin can be a problem, too - not for eyes, but for everything else. Your organs may be too weak, skin too fragile, etc.

Coolest thing that I have personally done: I helped a husband get his wife's corneas after she died. He was able to see again through his own wife's eyes, basically. One of the coolest things I have ever done in my life. The people in the organization had never even heard of that happening before. I expected the local news to call or something.

BunsOfAluminum3 karma

Wow, that does sound cool. And it would be a constant reminder of the gift she gave him. Did he get priority because he was her husband?

sleeptrouble3 karma

Yes. He requested it and we were able to make it happen. You can request specific recipients, but the likelihood of it happening is almost impossible. We lucked out because he already had a cornea surgery scheduled before his wife died, so the timing we perfect, so to speak.

Unicornrows3 karma

Has such a visceral job helped form your philosophies on life, mind vs. matter, etc., and if so, how?

sleeptrouble4 karma

Great question. I think it has made me a little more paranoid than normal. I read thousands of medical charts and I see that this person only had a headache and then three days later, they died. Now, when I get a headache, I think, "oh fuck!" But it doesn't ruin my life, I am just more aware of how any day could be the last. Death has always fascinated me and been a big part of my life, so I haven't changed too much. I am more comfortable with death and bodies than I ever thought I would be. Also anger and tears no longer bother me. Perhaps I have become a robot. A kind robot.

chilindrinalover3 karma

What's the pay?

sleeptrouble4 karma

Enough that I can afford to start a family.

birchpitch3 karma

My card says I'm an organ donor, but I lived in Europe for longer than three months and therefore (I believe?) am ineligible to donate anything. Blame the DMV. How would this affect your job when it comes to me?

sleeptrouble3 karma

Well, we would likely have to decline donation due to the concern for CJD. But only if this travel time was between 1980 and 1996, I believe.

birchpitch3 karma

It was, my father was stationed in Europe for three years. Consequently, we came with him.

Seriously though, am I going to get in trouble for having the organ donor mark on my license?

sleeptrouble3 karma

No, no one will get in trouble for having donor on their license. You could have AIDS, Hep C, and CJD and still be registered to be a donor - you just won't be one.

jkirlans52823 karma

Can you offer any information on living tissue donation, such as kidneys bone marrow etc. I've been able to only find a small amount of info online. In the case of living tissue donations is it typical that the receiving party or some 3rd party advocate group would foot any and all medical bills? I'm pretty sure I read some organizations have a limited 1 year insurance for complications that they offer to donors.

sleeptrouble2 karma

I actually don't know anything about that, I am sorry. I should look into that more, though.

Octavarium_3 karma

I want to donate my organs but I smoke. Is there any point?

sleeptrouble7 karma

I would stop smoking, but no, without any medical problems, smoking would not prevent you from being a donor. Smoking, itself, isn't the problem, it is the likelihood of developing cancer that is the problem.

thebenstone3 karma

If someone checks the organ donor AND science donation: is there ever a fight for who gets the body? I heard somewhere that a body that has donated organs will not be used for scientific purposes. Is this true? What's the ideal donor card look like, in your eyes? (no pun intended)

sleeptrouble9 karma

Organ donation has priority - they are life saving. Tissue donation comes second - it is life enhancing (and sometimes life saving). Donating to science happens when we cannot find placement with transplant (because that is our first goal).

I don't have an idea of an ideal donor card. I have an ideal situation and it is this: your entire family knows you want to be a donor and are willing to help with the process.

jennave433 karma

[deleted]

sleeptrouble7 karma

1) If we cannot find someone to complete paperwork, then we cannot go forward with the process. We can even complete paperwork with a friend or neighbor if they can answer questions and there is no legal next of kin.

2) There is a next of kin hierarchy that helps to prevent disagreements: spouse, adult child, parent, sibling, grandchild, etc. A spouse can overrule a mother-in-law for the first time in history.

huehuelewis3 karma

I saw a motorcycle rider who had a bumper sticker saying "ORGAN DONOR".

If he were to get into a fatal accident, would that sticker be likely to have any effect on speeding up the organ donation process?

sleeptrouble2 karma

No, but if his family knows of that sticker, it would help. Maybe a cop saw the sticker and told a nurse who told the family. That would help.

dufourgood2 karma

Can you ever deflect some donations to science, and wonder how these organs survived certain circumstances? Instead of putting them into use somewhere else?

sleeptrouble3 karma

Not really. I mean, you can donate your brain (which is not transplant-able) in order for people to study it. This is becoming more and more if a thing with football injuries and early-onset dementia.

purpledust3 karma

your brain (which is not transplant-able)

I love this. How about my soul. Can I donate that?

sleeptrouble4 karma

Yes, but let's do it illegally: can I buy it for five bucks? Milhouse bought Bart's soul for that much.

chilindrinalover2 karma

Do you have people that donate penises or testicles and vagina parts?

sleeptrouble2 karma

No, we never have any sexual organ donation going on.

chilindrinalover2 karma

What is the process of "installing" an eye?

sleeptrouble2 karma

Well, we only transplant corneas - not the whole eye. But it is a surgical procedure and there are transplant videos online.

gnrl22 karma

Is there a way to positively ensure that absolutely none of my remains will be used for any purpose whatsoever?

sleeptrouble3 karma

Yes, tell your family: spouse, kids, parents, siblings, etc. Tell them you do NOT want to be a donor under any circumstance.

Account_Number_82 karma

Do you engage in any policy work?

I ask because I've been toying with a simple solution to the donor problem. Simply put, if you're an adult, you need to be signed-up as a donor for at least three months prior to the onset of any condition that would make you eligible for a transplant. If you aren't on the donor list, you can't be a recipient.

sleeptrouble6 karma

No, I don't engage in anything like that (I honestly don't have the time or mental ability after I finish my job...it is a very mentally demanding and exhausting job at times). I commend you on your thought process. We encounter a number of folks who receive organs, but then when they die, they refuse to donate anything. We don't understand it, but it is their choice.

courtstat2 karma

If I had a staph infection several years ago (infected my blood), does that affect my ability to donate? I haven't donated blood since then simply because I'm scared they won't be able to use it. I'm just curious as to whether or not it will have stayed in my system after all these years?

sleeptrouble2 karma

Highly unlikely. Typically if an infection has been over a 3 months ago or even a few weeks ago, we aren't too concerned by it. We will pay even more attention to make sure everything is ok, though. You should be fine. Glad you made it through that - sounds awful.

FLGulf2 karma

Have you ever taken a penis or a scrotum?

sleeptrouble14 karma

Nope. Don't need another one.

a_strange_one2 karma

What are some common issues that prompt you to reject eyes or other tissue?

sleeptrouble2 karma

Infections. Any sort of systemic infection within 24 hours of death is very concerning. Age, too. People over 80 cannot donate for transplant (at least in my region).

jcsimpson2 karma

As a hardcore smoker for the past ten years, what are the chances you'll use my parts if I die tomorrow? I'm 27, for context.

sleeptrouble5 karma

Unless you have lung cancer, nothing would be off-limits. I will take 'em all!

badf1nger2 karma

When it comes to a single full transplant from a donor to a recipient, what does the health care system stand to profit from societies donation? How much does the hospital take/make, doctor, ect?

Would offering money for the promise of donation (like plasma banks) increase your selection of useable tissues/organs?

sleeptrouble3 karma

I have no clue what people make in their fields, so I cannot answer that question. I work for a non-profit, so there is no financial gain that is not put back into the business or into the employees. You cannot promise anything for donation because: a) that is illegal, and b) no one knows who can be donor until they are dead. Sure, being able to offer money would increase the amount of people willing to be donors, but it wouldn't improve their medical history or the way they are dying.

LeMoofinateur2 karma

Hi, I am registered as an organ donor here in the UK. I have given blood several times but now I get screened out of the process due to the fact that I have slept with a man who has slept with another man. Would this fact also affect my organs being donated?

sleeptrouble3 karma

Yes, but that has recently changed and will likely continue to change in the future. The FDA is pretty damn slow on changing their policies. Homosexual men are linked to high-risk activities, which is why it has been a problem, historically. There was a time when a man had sex with another man, he couldn't ever be a donor. Then it was changed to sex with another man in the last five years. Now it is starting to become sex with another man in the last 12 months. I think eventually it will cease to be a problem.

LeMoofinateur2 karma

To be fair it was a good few years ago now and I've had many blood tests since, all fine, I don't know if that would show up on medical records.

sleeptrouble2 karma

It likely will show up, but we will just make sure it is long gone.

b3ntly2 karma

My grandfather died in his late 60's from cardiac arrest, and his eyes were donated. I know nothing about where they went or how they were used, just that he had some saggy lids at his funeral. Where do the eyes typically go? How are they used?

sleeptrouble2 karma

Typically when we look for transplant placement, we start locally and work our way out (unless someone put a restriction on the donation like "no transplants outside of the U.S." or something). His cornea was likely removed and it was then transplanted into someone in order to help them see again.

kperkins19820 karma

in my opinion not donating makes you a giant dick I'm not talking about the religious part of it, I'm talking about just not taking the 5 minutes to tell your family it is very important to you it should be a law that you have to opt out of organ donation in the US, how many little kids have to die on a waiting list before we get our shit together, if you are dead you are dead, not having that conversation is effectively killing somebody I've made sure everybody in my immediate family knows how strongly I feel about this, so that when asked they will instantly recall my wishes

Do you feel that a law to make it mandatory ever has a chance of passing ?

sleeptrouble2 karma

I agree with you, but people have their beliefs/opinions and I cannot argue them. People often just say no because they don't have the facts (part of the reason why I have done a few AMA's). I wish we had an opt-out program that way if you didn't want to donate anything, it was obvious and that's that. I doubt it will ever become mandatory because it is really hard to force people to do anything. I wouldn't want to force someone to be a donor if they didn't want to be.

kperkins19822 karma

I suppose it depends on why somebody isn't a donor

if somebody has religious beliefs or other, the most likely feel pretty strongly about that, and would be opting out

however if somebody just hasn't thought about it, or even worse they want to be but nobody knows it is such a terrible waste

there are tons of areas where people don't like something but the government steps in for the greater good

this seems like a no brainer, I don't understand why a politician hasn't run with it as their platform, I mean can you imagine a guy standing in front of a childrens hospital saying he supports saving them not being extremely popular?

sleeptrouble1 karma

I agree with you, I just don't think people think about it. Politicians have bigger agendas to attend to (although I disagree about that).

vabast-2 karma

How do I get my family/estate compensated? It doesn't have to be much, I would be OK with as little as 10% of what the doctors/hospitals bill the recipients of the tissue.

You don't work for free. Nor do the doctors, insurance companies, nurses, or anyone else. It is unethical that those people be paid but the person who enables all the work by agreeing to have issue harvested does not. Until that unethical situation is corrected why should I participate?

sleeptrouble3 karma

It is not unethical to pay someone for doing their job. NOT paying them is unethical.

Paying for donating organs is called black market donation, which is illegal. People didn't go to school to become doctors, surgeons, or donation coordinators for free. As much as I would love for families to be rewarded financially, we simply cannot legally do that. The compensation is knowing that your loved one may have helped save a life or allow a man to see his wife for the first time in 30 years.