Deceased Donor Question....

[smcd23]

For those who have had a deceased donor organ - do you ever get the chance to thank them? Like send them a note or something?

I am so glad this kidney is working out for Tony, but I also do feel for the family that lost a loved one today and offered their organs for donation. I really want to send them a card or a note and express my condolences, but also let them know what a wonderful gift they have given. I want them to know that their grief has a bright side - the organs from their loved one went to a young father who has had kidney problems for most of his adult life, who also has a young child who has never experienced a "healthy" father (Tony started dialysis when I was 6 months pregnant, so Marcus has only known him on dialysis, and he is aware of Daddy's machine).

Is this even possible or am I just high on this happiness and good fortune? Who would I talk to? I assume the coordinator? Does anyone have any experience with this?

[MooseMom]

I've just seen your other thread posting about Tony's transplant!  AND your marriage!  How wonderful!  Oh, I am thrilled for you both; I'm so excited.  It must be such a relief that the problems encountered the first time around don't seem to be an issue this time.  You must be so incredibly relieved.

About the donor family...perhaps each tx center has their own protocol, but I suspect that actually, most have the same.  My coordinator told me that all correspondence with the donor family must initially go through her or through a person on staff that coordinates such correspondence.  My tx center has a lady who fills this role; a member of her family was a deceased donor, so she has good experience guiding a new recipient in crafting a letter of thanks.  There should be no details that would lead the family to be able to identify you.  If, as time goes by, both you and the donor family want to engage in regular and more personal correspondence, you both can give the tx staff permission to divulge contact information.  But the short answer is that yes, initially all letters should go through the coordinator.

I was given a three ring binder filled with information about all aspects of tx, and one chapter addresses this issue.  Interestingly, they suggest that a new recipient send a thank you to the medical team that looked after the donor.  There is also a sample letter that you can use to draft your letter to the donor family. 

Again, congratulations!  What a wonderful day!

[smcd23]

Thanks for that information! I think tomorrow while I am sitting around twiddling my thumbs watching how much he pees (LOL) I will draft up a letter. I think I will say something along the lines of I am so sorry for your loss, and I understand how difficult the past few days must have been. I do want you to know that your kind act of offering your loved ones organs for donation has allowed my husband (so funny saying that!) to receive a long awaited kidney, which to this point has functioned fantastically. My husband is a young man, and has dealt with knowing that he was going to need a transplant for his entire albeit short adult life. We have a small child together, who has only known his daddy as being sick and on dialysis. Your generous offer has allowed our family the chance to grow and be healthy in a more normal way, and for that we are truly grateful and forever in your debt.

Obviously I will make it a little more caring sounding - but do you think something like that would be appropriate?

[MooseMom]

Do you want my honest opinion?  If so, here it is...

I am wary of ever saying "I understand how difficult the past few days must have been" because unless you have been in a similar situation, you don't understand, just as the donor family probably doesn't understand how difficult dialysis has been.  If you know nothing about the donor, you know nothing about the family.  Maybe the donor had no family, or maybe they were estranged.  I think it might be wiser to leave that part out and focus on how their generosity will change your family's life forever as you have already outlined.

I also think that it would be a very good idea to speak to the coordinator first; maybe show her/him a draft of your letter and ask if it is appropriate.  It's hard to write a letter, especially under such emotional circumstances when you will be exhausted in every sense of the word, to people you know nothing about.  Let the coordinator guide you.  It's part of their job.

[smcd23]

Hrm, I've experienced death and having to make the decision to donate organs when my grandpa died. But I do see what you mean. I will have to speak with the coordinator tomorrow. I really need to go to bed too, I'm just so flipping happy I can't sleep!

[MooseMom]

I'm sure you will write the perfect letter!  But first, get some rest and enjoy this wonderful miracle.  Have happy dreams!

[lainiepop]

Don't know bout in America but When I had my transplant here ,in UK a Couple weeks ago I Was in a Ward With 3 deceased donor transplants & I asked them the Same thing as I was curious& one told she'd asked & Was told they couldn't even tell them anything about the donor to protect the family' s privacyx

[MooseMom]

Yes, protecting the privacy of both donor and recipient is a very big deal here in the US, too.  All sorts of legal issues...

[smcd23]

All they told us was that the organ came from someone in their early 40s (he slipped up and started to say 43) and that he the surgeon thought it was an excellent organ for Tony. So in my mind I am picturing a person in their early 40s, eating an organic diet, a hippy if you wi, who had never touched more than a glass of wine who had a terrible accident.

[bleija]

yeah US is huge on privacy, everything so far with my brother the center has told me nothing, i had to make my brother call, and he told me, and wepicked a day, then he called and told them, and even now that i know and everything they keep us totally separate. even when we are going in for pre-op, same day totally different buildings

[Chris]

In Illinois, we have to go thru the Gift Of Hope to send letters and must follow a protocol. There maybe a center you have to go thru also in your state or area who has a certain protocol to follow when righting a letter. Your transplant coordinator should have this information on who to contact to send a letter. Some center will submit the letter for you, but bewaware it does take time and you may have your letter sent back to make necessary corrections, such as eliminating any names, specific names of area you live in.
 
I waited a little over a yuear to send a thank you letter. For me I wanted to let the famiily grieve first, sending a letter so soon did not feel right to me since it may upset them.

[jbeany]

Michigan has a Gift of Hope (Life? Can't think of the name right now.) program as well, and they are the go-betweens for all correspondence.  We only get first names, no locations, and all letters are read and approved by them before they are sent on.  It's a good thing - it protects both sides.

[smcd23]

I wonder if that organization is nationwide, I am going to look that up.

And I never thought I'd want to write a letter of thanks, mostly because I never thought the day would come to be honest, I prayed it did, but sometimes it was hard to keep faith. Anyway, when we got the news that everything went well, and that the donor (43 year old male in excellent health) had not only given up the kidney but also his pancreas to another man down the hall from Tony, and who knows what other organs, my heart swelled with joy, but also ached for the family. I don't know which man on the floor got the pancreas, but I assume he was older (they said Tony is the youngest person on the floor by many years) and I just instantly wanted the family to know that we appreciate what they did, and how grateful we are. And I was speaking with a friend who said that it might help ease the pain of losing their loved one to know that they gave a very active and happy two year old a chance to have a father that could keep up with him, take him places and show him things. I know if I was in their shoes, I would say great yeah my husband/son/brother saved someones life, great and not really feel anything, but if I found out that it was more than just one man, but a young man with a family, I'd be happy for the child. But that could just be the mom in me, too.

I haven't seen the coordinator yet as it's the weekend and I don't think they are in the hospital - the surgeon showed up on Saturday morning early in his jeans and a t-shirt. I am hoping tomorrow I can call her as I don't plan on going up there to see what procedure on these things is at their facility.

[Chris]

Michigan has a Gift of Hope (Life? Can't think of the name right now.) program as well, and they are the go-betweens for all correspondence.  We only get first names, no locations, and all letters are read and approved by them before they are sent on.  It's a good thing - it protects both sides.

I forgot which name they changed to now that you mention it jbeany 

[MooseMom]

I know if I was in their shoes, I would say great yeah my husband/son/brother saved someones life, great and not really feel anything, but if I found out that it was more than just one man, but a young man with a family, I'd be happy for the child. But that could just be the mom in me, too.

I know you will be very careful, but do keep in mind that a man who was only in his early 40s might have been had a young family, too.  He might have had a young, active child who now does not have a father.  You just don't know, and you won't know because that would be giving you access to too much personal information about the donor.

I'm sure the donor's family knows that his organs went to more than just one person.

I don't think there is a nationwide program for donor tributes/correspondence.  To follow up on what Chris said, in Illinois, Gift of Hope is the organ and tissue procurement and typing organization, but they also are involved in helping to write post tx correspondence if you wish to use their services.  If Tony's tx team don't have some sort of protocol, you might check with the institution that did his monthly hystocompatibilty tests.

[smcd23]

AH HA! The NE Organ Bank has a correspondence program and the facility we are at participates, so their webpage outlines what the letter can and cannot contain, and tells you how to submit it so they can review it and forward it. I am going to draft the letter to their specifications, and save it until Tony is home and stable, and then submit it.

Our organ network (and I am not sure if this is the same elsewhere) apparently sends correspondence to the donor family giving them updates on how the surgery went, how the recipient is doing and then follows up with them to help them grieve. I didn't know they did all of that and offered so much support - that's really cool!

[MooseMom]

Is there any reason why Tony isn't drafting this letter?  Have you discussed it with him?  This shouldn't be left for you to do simply because you are "the woman".  It might be nice for the donor family to receive a letter from Tony himself.  Just a thought.

[RichardMEL]

I was wondering the same as MM while reading... surely the recipient should be writing?

Anyway here's a perspective from down under on this.

When I was first listed I thought about this and decided there and then that whe(if) I got that miracle gift I would wait at LEAST six months before writing a letter. Why? Two reasons: 1. To give the family time to grieve and start to come to terms with their loss and 2. In case the organ did not work out or something I wouldn't want to pre-empt things.

As it is it came to that six month mark, and as it happened I was trying to help someone else (I think actually from IHD) draft their own letter and I realised just how difficult it was - both to try to express things, but also to write a letter without any idea of the "audience" who may receive it, and what their state of mind might be. I thought - how bad would it be to talk about travelling and living a wonderful "new" life as a result of their loss? It would seem wrong to say that - to almost "rub it in their faces" as it were... but later I came to realise that if a family wanted that letter - wanted to read it - they probably would want to know the positive impact.

Down here, as others have said, we can write, but in general the privacy is very strictly controlled - for example my TC said I can only give my first name but not identify where I am or anything like that. What I write is first vetted by the TC, then passed on to the Australian Red Cross(who handle the donor registry thingy) and they then contact the family and ask them first if they want to accept the letter and then they can write back if they like (same privacy happens) and yeah.

They have these shows on TV where families get to meet face to face - I'm honestly not certain how that works with the privacy laws.. perhaps the RC co-ordinates interest of both parties, sign a lot of forms etc.. I don't know.

Anyway I eventually sent my letter earlier this year - I think in Feb or March - so well after a year post tx. TC said it was perfect and she didn't have to change anything. She said she gets more responses than ever before these days, but so far I've not gotten one. Not that I'm expecting anything of course.. but I feel I have tried to do the right thing.

Either way I am always keeping my donor in mind and they are never too far from my thoughts as I live the life I am allowed to live thanks to their, and their families generosity.. and no letter can ever really make up for how important, special and wonderful that is.

[amanda100wilson]

 I received a transplant in the UK and letters were managed by the transplant co-Ordinator.  Anonymous letters of thanks were encouraged.  I knew the donor was 3 years younger than me and had died in a car accident.  I wrote to the family, kept it simple by expressing my thoughts of their loss and gratitude to them.  I also told them about my hopes for starting a family.  I received an anonymous letter from them saying how much comfort the letter gave them.

Years later when I had my son, I sent another anonymous letter via the transplant co-Ordinator to tell them my news, but on a separate piece of paper attached my name and address, making it known in the main letter, that if they would like to communicate, that my dtails were available for them.

They communicated, and so started a correspondence that continues to this day.  When I visited the U K, we met up.  They are wonderful people and I am blessed to know them.

[MooseMom]

I have been thinking about this topic all day; in fact, I think I may have even dreamt about it.  LOL!  My thoughts on this issue are all over the place, and I thought it might be interesting to have a discussion about it.

First, RichardMEL, it's nice to see you posting again.  You made some very good points about "the letter"; thank you for sharing your own thoughts on the subject.

I had always assumed that, well, of COURSE you'd want to send a letter of thanks if you've received an organ, and of COURSE you'd want to receive one if you had given permission to have your loved one's organs harvested after death.  But then I read this here on IHD's news articles forum and thought it might be germaine to this discussion.

http://ihatedialysis.com/forum/index.php?topic=23652.0

The woman in this article made me realize that perhaps we are guilty of creating the image of the generous, saintly donor family because that's what we WANT to see.  Tell me if I am wrong, but I suspect that most people who receive a cadaveric donor feel some sort of guilt or, well, something because the brutal truth is that we have benefitted from someone else's death.  That can be a heavy burden to carry even though it is not like we WANTED someone to die just so that we could live fuller lives.  And I sometimes wonder if, to apply a balm to that emotional wound, we conjure up the image of a grieving donor family who finds comfort through their generous act.  Undoubtedly, many donor families DO feel this way, but the woman in the article is apparently not one of them.

Do you all feel that should you be lucky enough to receive a cadaveric transplant, you should be required to send a "thank you" correspondence like the woman above believes?  I am assuming that I would be thrilled to send such a letter, but it's easy for me to say that now when I am not struggling with the affects of surgery and meds and the general anxiety that comes with tx.  This is why I think Richard gives good advice about waiting a while before entering under this sort of correspondence.

I have to wonder if the media has an interest in pushing these feel good stories about grateful recipients meeting with donor families whose grief is magically erased by the sight of healthy tx patients.  We don't hear much about the feelings of patients OR donor families where the donor organ has failed or the surgery has gone horribly wrong or some other such awful thing.  Clearly this woman in the article was feeling bitterness and entitlement, and I can't believe that she is the only donor family member to ever feel this way.  Thank goodness that there seem to be pretty strict protocols in place for correspondence.  You never know who is really feeling what, you know?

I wonder what the outcome was/is of this woman's crusade.  Anyone happen to know?

Should a recipient and/or a donor have any "rights" other than the right to privacy?  What do you all think?

Is there anyone out there who has received a cadaveric tx who decided NOT to write a thank you letter to the donor family?  Would you be willing to explain why?  Thank you.

[Chris]

As far as requiring to send a note of thanks, I do not support that. That dulls down the senserity of the whole thing and for some they may rather receive nothing than receiving possibly a premade letter for all with first name inserted.

[smcd23]

MooseMom - To answer your question, I know Tony is appreciative and thankful for the organ. I also know he feels bad that someone had to pass, because on the ride up to the hospital he made a comment about it. However he is also a man of few words. If it were me in his shoes, I'd write a longish note offering condolences and also expressing gratitude and expressing briefly why it means so much. Tony on the other hand would say about 2 sentences along the lines of sorry for your loss, thank you for donating, and in the end I think he'd come off as short and sincere if left to his own devices and vocabulary. He's just not someone who can easily utilize words, and he isn't very articulate when it comes to expressing feelings. Maybe it's the way he was raised, maybe it's just part of being a guy or part of his personality. He's more of a I'll show you person than a let me explain it to you person.

I did read the article you posted, and I agree with Chris, I think requiring a note seems a bit insincere and perhaps even cruel. And I don't agree with the donor family should get the name/address thing either. How would you feel, as the donor family, if you found out that your loved ones organs went to a criminal who had finished a 20 year sentence for a heinous crime? Not that they don't deserve a chance to live, but I'd rather NOT know that's where my loved ones organs went. I'd like to romanticize that it went to someone like my loved one.

I've thought about the note thing all day. Like really all day. And I've formulated a few in my head, and I am thinking I will write something, and ask Tony to proof it over and add something to. So it expresses appreciation from both sides - his as the recipient and I as the recipient family. I am going to write it once he is home, but save it for a few weeks until we know just well everything is, and so the family has time to grieve. 

[MooseMom]

smcd, that sounds like a good plan.  Tx affects not only the patient but also the family, as you know, so it is entirely understandable that you would want to express your own appreciation.  A joint letter written by the two of you together (even if it is you that does most of the actual writing) would be a very nice gesture.  Again, I'm so pleased that you are having to think about this in the first place!  LOL!  It's a GOOD problem to have!

[smcd23]

In one of my mental letters (haha) I was thinking of writing something myself now and dating it with the expression of condolences and just a little bit about how awful things have been for him physically and emotionally since 2008 when things went down hill. Then in like a few weeks when he's off all his IV's, down to less frequent check ups and able to start doing things again that he wasn't able to do on dialysis (fishing, spending time with the 2 year old, hiking, gaining weight etc) write something explaining how different his life is, and how thankful he is, dating it and then sending it.

My neighbor is a nurse in the ICU at a local hospital and she says our organ bank sends the hospital staff and the donor family an update on the recipients health a month or two after transplant also, so I think I am going to try to time our letter to coincide with the medical update too.

[Chris]

I would first ask Tony to write one and then go over it and make slight suggestions. That way it is more from him the recipeint, he may surprise you with your input to help his thought process. Also right now it is not the right  time to push someone to write a letter, wait a couple weeks so more concentration can be done on healing No need for added stress Yes, we guys are different