Just a small thing....

[MrMike66]

I donated a kidney as an altruistic donor to a stranger 3 weeks ago as part of a chain of 6 donations through the national kidney registry.  I was delighted to "get the most bang for the buck" with my one kidney essentially helping 6 people through a paired exchange program.  What's even better is that they will end a chain in the future at MUSC because I donated there.  Cool right?  7 people get new kidneys!

So my one small problem is that I have never heard anything from the person I donated to?  I was hoping to hear some small, "hey Im doing great and am now moving on with my life" email or something.  I never expected a relationship or anything, just an acknowledgment.  My transplant coordinator said that its up to the recipient to make any contact.

Im overall very satisfied (95% out of 100), but curious if this is typical of how the program works.  I would be 100% happy and have full closure with the whole experience if I heard something.  I hadnt thought too much about it but my friends and family are shocked that I have not heard anything and keep asking.  Is it too soon?

Anybody have an opinion?

[PastorJeff]

I did the same as you through NKR back in September at UCSF.  My chain was intended to be the same length.  All systems go until the night before the surgery when the second recipient broke the chain because of a last minute discovered condition.  Unbeknownst to me the chain went from seven to two and I haven't heard if it was ever repaired.  Big disappointment but I received a consolation.  My recipient reached out to me and in the past six months we have enjoyed a very special relationship.  It doesn't always turn out that way and when he first wrote me, I debated whether to respond.  I didn't want someone to feel beholden to me.  I was just glad to help someone, anyone.  Maybe that's the way you can look at it until something should change.  You got to initiate a tremendous good!!!  What a privilege you have been granted.  That should carry you for some time.  Yet it seems to me your transplant coordinator could at least check to see how your recipient is doing.  I would ask for that.     

[Fr Pat]

Dear "MrMike",
     Congratulations on your donation! Great!
     I donated non-directed over 11 years ago, before they had developed "chains", so it was "one-to-one". I was told at the time at that hospital (right from early in the evaluation process) that I would probably never know the identity of my recipient, as the recipient's privacy would be carefully protected. That was O.K. with me. I did have a pleasant surprise later when I went for a check-up with the surgeon and he handed me a nice unsigned "thank-you" card from my recipient. I responded with a nice "You're welcome" note likewise unsigned and sent through the surgeon. That was the only communication, although the hospital knows that I would be pleased to meet the recipient if the recipient ever wishes it in the future. I think it was good that the hospital was explicit with me from the start that I should not count on communication afterwards, as it is always possible for the non-directed donor to have a few "strings attached" to the gift without even being consciously aware of it.
     I think that at present some hospitals do encourage communication between non-directed donors and recipients, while other hospitals are more neutral and will only facilitate communication if the recipient spontaneously requests it. Even in those cases, some hospitals require several months of "cooling off" before communication, to make sure the recipient has settled down emotionally and gotten their medications under control before making the decision to get in touch.
     So, enjoy having given a wonderful gift! If you get communication and even a nice friendship with the recipient later, that will be an added bonus. But please don't feel bad if it doesn't happen. Every recipient is different, and some are dealing with a pile of medical, family and financial problems as well as learing how to manage their anti-rejection meds. So entering into communication with the stranger who donated may seem too much to handle, or too threatening, for a time. Be patient and accepting.
     I ought to mention that over the years I have read many beautiful stories of wonderful meetings between donors and recipients. But there have also been some bad experiences. A few "altruistic" donors, despite the screening process, have shown up later to ask for loans, gifts, jobs, dates, etc. from their recipient. One recipient had to take out a court Order of Protection because her "altruistic" donor insisted in being disturbingly intrusive in her life. There was a non-directed donor at this site years backwho mentioned that he was e-mailing, texting or phoning his recipient a dozen times a day to make sure "she was all right". There are all kinds of folks in the world. So some hospitals which have had such experiences may urge the recipient to be cautious.
     And finally: "be careful what you wish for." I have joked about how I might feel if I met my recipient and she/he turned out to be the head of a neo-Nazi biker gang who, thanks to my kind donation, was now murdering off all rivals in order to control drug sales in 8 States? Do I ask for my kidney back? Not knowing, I'm free to imagine that my recipient has by now, thanks to my donation, already won the Nobel Prize, the Pulitzer Prize, three Oscars and a few Grammys.
     Please do let us know if your recipient gets in touch. In the meantime just give yourself a pat-on-the-back and a "well done!" and wish your recipient well.
           best wishes,
                 Fr. Pat

[MrMike66]

Thank you both for making some important points.  I have heard and read some crazy stories.  I from the beginning decided on the chain option and their best medical match.  I originally looked through some of the stories on other sites and decided I didnt want to pick, it was too difficult to decide?  So I let the medical professionals decide. Im happy with the outcome.  Your points about what the recipient might be going through in terms of meds and finances etc. is really good.  Those points will keep my family thoughtful for a while.  I am overall happy and will be patient.  Thank you for the support.