Getting Support: Help Along the Way

Back in September, I had to meet with a “donor advocate,” someone not affiliated with the transplant center.  But why?   I could understand those that were giving to a loved one needing someone to make sure they were not feeling overly pressured to donate a kidney.  But my donation was my idea.

By the end of the meeting, however, I was glad for it.  It was encouraging to review with someone independent my motivations, understanding of the risks and benefits, and implications for my family.  When I summarized my reason for doing this with “Why not?” she understood because she had heard it many times before.

While family, friends, and the transplant team have been universally supportive of my doing this, there have been many other people who, like the donor advocate, have been of help during this process especially because of their personal experience with this issue.

Diane has been invaluable throughout, not only as my contact with the National Kidney Registry but also as a donor herself.  She recently talked with me about what to bring to the hospital (for example, loose-fitting clothes and a pillow for the ride home) and what to expect in the days and weeks afterwards (lots of fatigue, sleep, and gas).  She said NKR would pick up the cost of a hotel room near the hospital, which my wife gladly accepted.  As the doctor had emphasized, she mentioned the importance of my managing the pain afterwards with meds and not picking up anything heavy for weeks.

Online I’ve received support and encouragement through social media, including NKR’s group on LinkedIn and the Living Donors Online group on Facebook.  I’ve also come across items of interest to me through these groups that I hadn’t otherwise seen in my usual internet searches.

Reading through blogs of other donors, from their first posts onward, have helped me feel connected with others who also sense this calling to share a kidney.  One of my favorites is Angela Stimpson’s blog.

Contacts by phone and email with other donors have also been supportive.  Diane put me in contact with Barry in a neighboring state who is about my age and started a chain not long ago.  Here’s something from an email he sent me yesterday:

“No regrets.  None.  To this day.  The euphoric high of the experience does indeed wear off, so please work to minimize an emotional crash and burn from that.”

Barry’s point was well taken.  It reminded me of other comments from my reading online and from the transplant team social worker.  It sounds to me like a kind of “postpartum depression” can set in, after the excitement of the donation itself.  Perhaps knowing in advance that this is possible and normal will help.

In fact, that seems to be a big part of what all this kind of support provides:  knowing and accepting in advance what to expect.  There’s no substitute for getting help from those who have gone before.


About Ray Mueller

Husband, father, Christian, pro-life, kidney donor, video producer & editor
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