Donated a kidney anonymously - feeling a bit lost....anyone else feel this way

[Juannut]

Hi,

I donated a kidney earlier this year (2014)  anonymously and since doing so have felt a bit lost.  As an altruistic or anonymous donor I don't know or will ever know who received my kidney which to me was a plus.  I didn't want anyone to feel like they owed me anything.  I wanted to give the gift of life with no strings or requirements attached.

Now that I have done so I am feeling a bit lost.  I feel like I still need to do more so that I can see or experience what the donation means or maybe do more to complete my journey.

Only a few people know about the donation and where I live the rules about discussing it are very strict.  Even posting this question might get me in trouble but it would be difficult to find out who I am.

So - Anyone who has donated a kidney or has experience with the donation process ever felt this way?  If so - how did you cope with the feeling of the journey not being complete.   

Any feedback and advice would be great.

Take Care,

[Fr Pat]

Dear "Juannut",
     Hi. I donated a kidney non-directed 12 years ago. I have not had your same experience, but let me toss some thoughts your way in case any of them might be of help.
--- The donation process (whether to a known or unknown recipient) has been described by many as a "roller coaster ride". There is anticipation and preparation, thrills and chills, ups and downs. Then it is suddenly "over" once the surgery is done and basic recovery has taken place. But it is not really "over" because it can be a life-changing experience, and it may take a while for all the thoughts and emotions to get sorted out. Be patient with yourself. It may take a while. Now you are looking back, while before the surgery you were always looking forward.
--- You might want to get involved as a volunteer with the National Kidney Foundation (www.kidney.org). They have a lot of educational and screening activities to help people spot and treat kidney disease BEFORE transplantation becomes necessary. They also do fund-raising ("Kidney Walks", etc.) To raise money for research and treatment.
--- I have several times taken part in the "Transplant Games" which take place every 2 years (this July in Houston).
Transplant recipients (heart, kidney, lung, liver, intestine, etc.) from living and deceased donors take part in athletic events to celebrate their new health and to honor their donors (known and unknown). Donor families attend to SEE the results of their generous donation of a loved one's organs after death. Living donors compete to celebrate their recovery, and to support each other. Where else will you find more than a hundred living donors in one place having a good time and chewing the fat? You would not see the results of your gift in YOUR recipient, but you would see what transplantation has done for others. You can locate your State or local team at www.transplantgamesofamerica.org . Even if you don't attend yourself, you could take part in your local organizing and fund-raising activities so that others could go. You might feel more a part of the "transplant community" and not so much a "Lone Donor". (There are assorted videos of the Games if you search "Transplant Games" or "U.S. Transplant Games" at www.youtube.com)

     So, there are some thoughts. Hope you find something helpful.
          Fr. Pat

[Juannut]

Hi,

Thanks for the prompt response!  I would agree with your comment about it suddenly being over.  That is a big part of how I feel.  I have offered to do some public speaking about organ donation - in particular kidney donation to try to encourage people to sign their donor cards and maybe even consider being a live donor. This is difficult as an anonymous donor but hopefully we can figure something out.

Unfortunately I don't live in the U.S. - I am from Canada so I don't think I would be able to participate in the Transplant Games.  I wish I could because being active and participating in sports is a big part of my life.  I am by no stretch of the imagination an athlete but I have played soccer (indoor and outdoor) my whole life and have always encouraged my kids to be active as well.

I think maybe I also need to celebrate my gift of a donation somehow.  I need to allow myself to feel good about what I have done and celebrate that I made a difference in someone's life.

Thanks for you feedback and insight!  It was nice to final share some thoughts with someone.

Take Care

[Fr Pat]

       Canada (and many other nations) also hold National Transplant Games this year. (In the alternate years instead of National Games there are the World Transplant Games with teams from each country.) The Canadian Transplant Games this year will be in August (2014) in Moncton, New Brunswick. Info at www.facebook.com/Canadian Transplant Association and Transplant Games. Info on past Canadian Transplant Games at www.canadiantransplant.com/english/events.
    Fr. Pat

[jtopper]

Hi there,

I, too, donated a kidney anonymously ten years ago this coming November.  I can understand how you feel.  I was adamant about anonymity for so long because of the same reasons you mention: I wanted to stay out of the "limelight".  It made me feel unconfortable when people responded with awe over something that remains so humbling.

The whole procedure is a time of focus on thinking of someone else and feeling as if you are part of something bigger and better.  I remember feeling a bit of an emotional let down when that emotion and experience felt at its end.  I have spent ten years hiding behind a feeling that I could and should do more.  This is the first year that I have come out and realized that there is indeed more I can do that is just as important.  In fact, I just this weekend decided to join the NorCal Transplant team to head to the American Transplant Games for the first time this summer.  I now realize that the "something more I can do" is to be part of the campaign for awareness for organ donation.  Father Pat was a mentor to me ten years ago (not sure if he remembers) and he has taken an active role in this endeavor.  The thought of escaping behind the veil and standing side by side with people like him has renewed my motivation and has actually made me realize that I was feeling a bit lost, too.  Incidentally, I SO HOPE I get to meet you there, Father Pat!

Perhaps there is something in your community that will allow you to be part of the bigger awareness, too.  I think we are a unique part of the donation process as anonymous donors.  It took me ten years to realize that rather than feeling like I calling attention only to myself about sharing my story, I can call attention to the greater cause.   

In any case, know you are not alone.  If you ever want to talk further, feel free to contact me.  (Jamie Topper)

Take care and God bless.

[Juannut]

Hi Jamie,

Thanks for your insight.  It sounds like you felt (feel) a lot like I do at the moment.  I appreciate your insight. You have given me a lot to think about. 

Your comment about sharing your experience to encourage others to donate or sign their donors cards really hits a chord with me.  Maybe in a while I will be able to not feel guilty about talking about my donation.

Take Care

P.S.  Maybe I'll make it to the Donor Games this summer as well!  Unfortunately the costs of donating were such that I don't have a lot of spare money at the moment.   Maybe I can drive to Houston!  It's only about a 25 hour drive....

[robkamm]

Hello Juannut.  I too live in Canada and I am currently working my way through the testing process to become a kidney donor.  If I complete the testing process successfully I will also be an anonymous donor or perhaps part of a paired exchange.  I find your comments interesting because I am adamant that people not know that I have donated -- I am an extremely private person and a total introvert.  Your comments gave me some insight into how I may feel after donating -- there has been so much medical testing and thought put into what I am hoping to do, I now realize that there is going to be a bit of a void in my life when I get to the other side!  Thank you for the food for thought.

[Snoopy]

Hi, Juannut.  Welcome to the club!
   I've also been pretty secretive about having donated.  However, I did inform my center, docs, and others who were involved or knew about my donation that they could quietly give my name to others contemplating donation.  I've served as an informal advisor or big brother to a few such folks.         

   Another idea is to use your experiences to help others by answering people's questions here on LDO--there are always new people joining who are just at the beginning, and feeling lost.  But rest assured, there are still lots of things one can do to "plug that hole" in your life, even without necessarily going public.
    Good luck, Snoopy.