Organ donation - the aftermath

March 30, 2009 10:29 AM

13 yrs ago, my BF (and roomie) had a brain aneurysm on a Friday and died the following Monday. At least 6 of her organs were donated to various people.

What I would like to know is: How are the people who received BF's organs doing? I don't want to know their names, locations or anything else.

I am not in contact with BF's family (for many reasons) and have no desire to ever speak to BF's mom again (for my own sanity if for nothing else) so I can't ask them for any info.

The hospital where BF died was closed after a new local hospital was built (6-10 years ago) so I'm not sure if they would be any help.

Where would I start asking for info? Should I even bother trying?

posted by jaimystery to health & fitness (18 comments total)

I lost someone I loved very much in almost the same way. It's hard when someone vanishes so quickly and surprisingly, and I completely understand the desire to see where "pieces of him" ended up.

But that said, it's probably best that you don't start poking around in other people's lives. Those people are not your boyfriend, despite the spare parts. It could be seen as creepy, as if you're after something (I am sure you're not, but still), and even at best you'll probably make those unrelated people feel quite uncomfortable even if you do contact them.

Assuming you're not in a position to, say, dedicate a bridge or commission a piece of art in his name, it might help a little to hang onto and protect a few physical objects that were once his, and even to remember that the air you breathe in was once breathed by him, too.

Best of luck.
posted by rokusan at 10:35 AM on March 30 [2 favorites]

You should start with the new local hospital. You should call and ask if they have the records from the hospital where your BF died. If they don't, I think you're pretty much out of luck. If they do, you can ask if they could forward letters from you to the recipients of your BF's organs.

You may run into trouble there because you're not a relative, but you won't know until you ask. They won't tell you any information about the recipients, because they're not allowed to, but they should be able to act as middleman on communications between you. Of course, even if you send letters to the recipients, there's no guarantee they'll write back. But you'll never know unless you try.
posted by cerebus19 at 10:36 AM on March 30

Looks like there is more contact between loved ones and organ recipients than there used to be.

"After the surgery, both sides are typically told basic facts about the donor or recipient — for example, age, sex and home state — and also that they can send a letter if they want contact, Paykin says. The letters go through hospital transplant workers and organ-recovery agencies, so no names are released without consent, she says."

Try contacting the agencies that handle the donated organs.
posted by wrnealis at 10:52 AM on March 30 [1 favorite]

BF = Best Friend in this post right, not Boy Friend? Not that it matters particularly to your question, but i missed the first Her and got very confused reading the responses before I figured it out.
posted by Potomac Avenue at 11:49 AM on March 30

Should I even bother trying?

I'm going to tread delicately here lest I be guilty of a AskMe habit I hate in other people, namely, delivering lectures on the morality of a proposed course of action in a way that has nothing to do with the actual question asked about how to conduct the proposed course of action....

But I think it might be a good idea to consider why you want to know how your best friend's organ recipients are doing. I don't think there's anything at all wrong with your desire to find out that the people are doing well, but in case it isn't possible to find out, perhaps you could think about what you expected to gain from knowing this, and whether there are other ways to accomplish that.
posted by orange swan at 11:52 AM on March 30 [1 favorite]

If I wanted to see your medical records, do you think the hospital should or would give them to me, just because I'm curious?

If you adopted a child through a closed adoption, would you welcome the birth mother checking in with you in a surprise visit to your adopted child?

I think it's the same principle here, protected by laws. I'm sorry about what happened to your friend, but the organs now belong to someone else, who has the right to privacy.

I've seen that there is a "middle-man" agency, similar to what they have for closed adoptions: After everyone is an adult, everyone can put information into the system. If both parties indicate on their own that they'd like contact, then a match is made.

Your need for closure is understandable, but I think legally the patients' rights to privacy trump your closure.
posted by Houstonian at 12:03 PM on March 30 [2 favorites]

How are the people who received BF's organs doing? I don't want to know their names, locations or anything else.

I suspect this is about the specific organs, but would you be interested in researching generic information about patients with particular organ transplants? Perhaps signing up for visitation or volunteer opportunities involving patients who have had such transplants would be a sufficient link to this event?
posted by odinsdream at 12:11 PM on March 30

Should I even bother trying?
I wouldn't go so far as to say 'no', but you do have an uphill battle. If you're not a relative and don't have direct communication with a relative, it's really really doubtful that the hospital will release any sort of information to you. Also, the fact that the old hospital closed means that those records are not easily accessable. Chances are they're in a box in a warehouse somewhere.
If a third party organization was involved in facilitating the organ transplants, that would be your best shot. They're the only ones who would have consistant information.
posted by JuiceBoxHero at 12:37 PM on March 30

If you could track down who has the medical records, it would be a huge violation of HIPAA to give that information out to anyone, conceivably costing the hospital tens of thousands to hundreds of thousands of dollars. Additionally, while your curiosity is completely understandable, it's pretty unlikely that the recipients of your friends' organs are going to be overly enthused to correspond with a random friend of their donor.

Sorry to say, I think that this is very much a non-starter. I'm sorry for your loss.
posted by LittleMissCranky at 12:44 PM on March 30

Taking off here on what LittleMissCranky is saying, I am putting myself in the place of one of the recipients. (Because this will be a consequence of putting your plan into action; I don't want to argue any morality about it either.) One day out of the blue I receive a call from some who says, "You are carrying around a dear friend's liver. How have you been doing?" Because, you see, even though you say I don't want to know their names, locations or anything else, I can't imagine how else you would be able to ascertain their well-being unless you got their phone number or email addy and got directly in touch with them. As mentioned above, this is an invasion of privacy. I personally would be quite skeeved out by such a phone call or email. If at least 6 of her organs were donated, you are talking, here, about at least 6 people who were in extremis and might have died were it not for the donation of those organs -- and while they may feel profound gratitude toward the donor, you will probably seem rather ghoulish to them.

I do not wish to minimize your loss or to be snarky. Please don't take my remarks that way. All I am saying is, perhaps it would be best to understand your friend's sacrifice as a genuinely noble gesture on her part, and move on knowing that you were associated with an incredibly special human being.
posted by Guy_Inamonkeysuit at 1:02 PM on March 30

I had a debate about this the other day.: would you want to know anything about the recipients of a loved one's organs?

Best-case scenario, the recipents' bodies accepted the organs, they went on to contribute to their communities and live long happy, healthy lives, living well and helping others. That would be awesome, and like a beautiful continuation of your friend's goodness. That's probably what happened, in fact, since most people are good.

But there are many other outcomes that would be less subjectively pleasing when all you get is a one-sentence summary: the recipients could have died, or developed other medical complications. Or they could be jerks, or they could have squandered their second shot at life by drag racing or something dumb like that. Probably not, but maybe. You probably don't want to know, if anything like that was the outcome. I think you would be better off looking up some positive stories about people who received donated organs, and just assuming, believing, and trusting that your friend's recipients were awesome like that.

Because even a "sad" outcome for the recipient might have been an amazing outcome if you could dig deeper, which you can't. Let's say you are told, "the recipient of her heart died in 10 months". That sounds like a sad ending. But maybe there was an amazing "in-between" outcome from those 10 months- something beautiful that made a real difference, but you wouldn't get to know about it with this level of inquiry. Maybe they had some really meaningful conversations with their teenaged niece who will be inspired to go on to pioneer amazing research that will change the lives of millions. Maybe they bought a puppy who will grow to one day rescue a toddler from a flooding creek. Maybe they bought a smoke detector that will save their entire family from a house fire. If all you hear is "recipient is deceased" you'll think it was a sad outcome, but your friend's organ could have made a huge difference in the lives of all the people the recipient's life touched before they died. You can never truly know the ripple effect your friend's last gift made, so I think you're better off imagining it and believing in it, rather than researching it.

There are some positive stories from organ recipients here that you could read. I bet there are also a lot of family medical blogs you could find that would give you hope & comfort. I think organ donation is an amazing act and I have such respect and compassion for the families and friends who allow their loved ones' deaths to have a silver lining for other people; so from a stranger who may one day need a donated organ for myself or a loved one, thank you.
posted by pseudostrabismus at 1:08 PM on March 30 [5 favorites]

If you're a student, or have access to scholarly journals, I suggest you look into the sociology of organ donations. There are a lot of mixed messages about donation. That is, recipients and their families are given one line, "It's just a part, like a cog in a wheel. You do not have the essence of another person inside you." While donors and their families are given another line, "You(r loved one) will live on in the recipient."

These conflicting messages converge in situations exactly like yours. The organ industry thrives because you believe that there is something significant about the people who have benefitted from your loss. And while the recipients may feel this way, they are strongly encouraged not to feel this way.

If you have any questions, feel free to drop me a line. I can

Boing Boing had a link in 2004 on the topic, to Crooked Timber

And Google Scholar lists some good articles to check out, some, of course, more relevant than others.

Including and apart from the organ stuff, for your own sake, please remember that grief is a slippery thing. It will never completely go away, and sometimes it will come in waves. You are normal, and your feelings of loss, however they come to you, are yours.
posted by bilabial at 3:13 PM on March 30 [1 favorite]

In a former life I worked for an organ procurement organization, this sort of follow up is more common than you might think.

First, since you had no legal relationship with your BF you will need to go through his family. But the OPO who handled the donation will in all likelihood have family councilors who as part of their job will act as a mediator between parties to give the donor family some general demographics and success rates of the transplants. This sort of follow up usually begins 24hrs after the donation is made as closure for the family and beyond that the transplant centers who performed the various transplants keep immaculate records of outcomes. So the information you want is definitely available, but without the donor family's involvement you're not going to get anything.
posted by paxton at 3:20 PM on March 30

It doesn't sound like the OP is looking to contact the people directly. In fact, she said she doesn't care about names and all that.

There's nothing morally or legally wrong with asking a general "how did all that go?" question. The people who "own" the privacy will accept or deny the request.

(The only downside is that after 13 years, the answer may not be terribly satisfying.)
posted by gjc at 4:59 PM on March 30

I suspect that there is no legal way to obtain this information. I suggest that the OP contact a Social Worker at the hospital involved to confirm this.

That said, my son was an organ donor, there is no way that I would expect this information to be available to me, or that it would be useful. I'm grateful that he made that decision, that's enough.
posted by HuronBob at 7:12 PM on March 30

For perspective's sake: Assuming you and your BF's positions were reversed, how would you feel about your BF pursuing this course of action?
posted by allkindsoftime at 12:32 AM on March 31

The folks above have pretty much summed it up. Without at least going through her family, there is essentially no way you can get that information short of someone committing a big HIPAA no-no. (I take care of and research transplant recipients for what it's worth.)
posted by drpynchon at 6:46 AM on March 31

You should find out the Organ Procurement Organization (OPO) for the region the donation occurred. You could most likely write to the OPO then, with the donor name and history and "possibly" get some info back from them maybe as to status of the recipients (think - yes they are all doing fine, or most are - nothing specific). I think they could give that info since it's not going to compromise the ID of the recipients, and I think you'd have enough info to explain your situation. Don't be disappointed if they say that only a family member can get info though, but it's worth trying. Worst that can happen is they say sorry, no can do.

Most recipient <> donor family communication is double blind for identifying info and passes via the Transplant program at the recipient hospital and through the OPO.

I'd try the OPO route if I were you.
posted by clanger at 7:59 PM on March 31