Nondirected/good samaritan donors and publicity

[jennybebopper]

Hi everyone,

I know there are several nondirected - or Good Samaritan depending who you ask - donors on here.  What have been your experiences with talking about your experience afterward, particularly with the media?  I didn't meet my recipient until about 1 year post-op at a dinner celebrating living donors & their recipients, and was approached by the PR rep at the hospital prior to the date to see if I would be ok with media being present at our introduction.  There wasn't any pressure from the hospital to do so, just a request.  I chose to keep that moment private, they didn't and haven't regretted the decision at all.

I have a similar opportunity coming up where there will be media present and the chance for me and my recipient to be interviewed.  On the one hand, I donated anonymously for a reason.  Many of my friends and family don't know about my donation.  I don't like the spotlight and don't want to be seen as attention-seeking when talking about my experience.  On the other hand, I am very aware that living donation needs advocates.  I am a healthcare professional myself and I feel a little guilty about not raising more awareness for this life-saving process.  I know the warm fuzzy stories that actually show real people's experiences can have an impact, more than just spewing out raw facts about donation and organ shortages.

Thoughts?  Suggestions?  Experiences?

Jenny

[Fr Pat]

     I donated non-directed over twelve years ago, and there is indeed a tension between wanting to get the word out about the need for organ donation and the possibility of living donation on the one hand, and the desire to not show off or draw attention to ourselves on the other hand. I think each non-directed donor works out his/her own path, and that can change over the years. Some non-directed donors kept very private about their experience for years, then decided to open up later on. Everyone is different. In your case, of course, you will have to be sensitive to the feeling and desires of your recipient, since public attention to you will probably bring attention to the recipient as well.
    I would point out that over the years I have heard from other living donors who have told me that reading about my experience helped them toward making their own decision. And in some cases they contacted me with particular questions that they knew only another non-directed donor would understand. And I have read about a number of non-directed donors who never even thought of the possibility until they read the story of someone else's donation. So all in all I guess I would tend toward sharing the experience in some way, but judging at each stage what is or is not appropriate.
      best wishes,
    Fr. Pat

[Clark]

We directed donors grapple with this, too. It was a challenging decision to go public, and that happened in three stages: our families, our faith communities and friends, before and after our surgeries, and then the public event, at which media would be reporting. The last abruptly opened up many more opportunities, some of which I pursued, and I others I haven't. That's going to be your choice going forward. How much to say, to whom, when. Every time, every opportunity that comes your way or you devote energy, time, and talent to create. As cliché warns, say what you mean, mean what you say, speak the truth as best you're able. Words live on, and revisiting them can be challenging if they weren't well crafted to begin with. I say this as someone who's overall had a good donation experience, with my recipient and gift to her both still in great shape more than 11 years out. Even so, my education as a donor candidate, my personal experience as a candidate and donor at one of the premier hospitals in the world, my deep research into the relevant peer reviewed literature available at the time and since all still drive me to speak of candidate and donor support, education, informed consent, and dignity to be considered equally with the need of would be recipients. We all strive to tell simple, easily understood, positive  stories. As with Occam's Razor, we serve best when our stories are no simpler than needed to accurately reflect the complexity of recipient need and donor response to that need. Best wishes as you step more fully onto the stage, into the bright lights, if you do. More excellent speakers always welcome, each with their own point of view.

[Mooge]

I decided to donate a kidney after reading an article written by someone who donated one - before I finished the article, I knew it was what I HAD TO DO (I think this sort of "aha moment" is not uncommon among non-directed donors). I donated through a non-profit organization that matches up non-directed donors to kidney patients. Many of the donors choose to remain anonymous and I initially thought I would too. I changed my mind after the director of the organization told me that EVERY time there is publicity of any sort about  living donation, the next day his phone is ringing with people interested in investigating the possibility of donating. And after all, reading the original article was what sent me down this path.
If you think donating a kidney makes you feel satisfied - wait until someone tells you that you were their inspiration and that they donated because of your example! It's indescribable.

[Snoopy]

Hi, Jenny.
  You've already gotten a nice, intelligent range of responses to your excellent question--but, what the heck, I'll toss in my two cents.
  I'm a non-directed donor who has still not gone public.  However, as a sort of compromise, I've encouraged the docs I've met during my (long) approval process, plus the volunteer organization that matched me up with my recipient and shepherded me through the process,  to invite those considering donation to contact me for advice, support, etc.  Over the past three years, I've gotten several calls from such candidates and, largely thanks to what I've learned here on LDO, I was able to pass along some useful information, tips, and real-life experiences.  Beyond that, I think I allowed that organization to use my initials for a newspaper ad promoting donation (I think they wrote that the full names of signatories were on file with the organization, or something like that).  So it's worth recognizing that it's not necessarily an all-or-nothing proposition.  And, of course, you can do other things for such organizations, such as helping draft copy, stuffing envelopes, making connections, some quiet fund-raising.
   Some of my reasons for not going public are purely personal.  On the other hand, it's also true that I've sometimes been a little uneasy with the hype that certain organizations and media stories generate about donation.  Yes, I'm thrilled I was able to donate; it's a highpoint of my life.  But:  there actually are some medical risks; there do exist some limitations in our knowledge of long-term effects of donation; some people do suffer unpleasant medical complications; others report serious family or marital conflicts surrounding donation.  Sometimes, the hype can sort of soft-pedal such issues, while trumpeting how wonderful donation is. 
    I guess one has a bit more power to negotiate exactly how one's name and experiences are used when dealing with an organization, but with a newspaper, magazine, or broadcast outlet, that's probably much less true.
    Whatever you decide, good luck!
        Be well, Snoopy