Betsy’s Need for a Donor Makes Local TV News

So glad that ABC News (WTVD) did a piece on Betsy Crais’s need for a second transplant (see the video), as I described in a post about my book’s co-author last month.

Betsy initially thought she had four possible kidney donors in her immediate family. A few weeks ago she received a call from the transplant center saying that one by one, all of them had been eliminated. Potential donors have to be in excellent health and can be disqualified not only if they have a condition that could potentially harm the recipient–but also if donating might jeopardize their own health.

Fortunately, Betsy has never been one to be discouraged for long. She took a deep breath and sat down to send off an email to friends, family, and colleagues, letting them know about her kidney failure after 15 years of a successful transplant. Within minutes of hitting SEND, Betsy was heartened to receive not only messages of concern and support but even several inquiries about how to be tested to be a donor.

Because the transplant center will consider and test only one candidate at a time, Betsy and her family now have to wait impatiently for word from the transplant coordinators. Although Betsy is on the waiting list for a deceased donor, that wait is often several years long. A transplant from a live donor might be just months away, typically has a better chance of success, and can last up to twice as long. Naturally, Betsy is fervently hoping for a live donor.

In the meantime, she had an access port surgically created in her arm in readiness for dialysis. Betsy’s condition is stable, so there’s a chance she may never need it–if a donor is approved in time, she could have a preemptive kidney transplant (that is, before she needs dialysis).

Memories of One Mom’s Donor Evaluation

Besides the gamut of medical tests, the donor evaluation entails interviews with a psychologist, a social worker, a financial counselor, a surgeon, and a transplant nephrologist. Coordinating it all and providing lots of support, is a transplant nurse coordinator. This team of professionals was assigned to me. My recipient–my son–had his own. The idea was to avoid any conflict of interest and to ensure that the donor not feel pressured in any way. These providers had my interests at heart, and every one of them had been forewarned that I was a wimp. They were cool with that. They never made me feel foolish or ashamed for thinking about queasiness or dizziness at such a critical time for my son (I did that myself).

The social worker wanted to be sure I’d thought this through. We had a teenage daughter who was dealing with her own adolescent struggles. Also, we’d recently moved my elderly father down from New York, and though he didn’t live with us, I was his primary caregiver. “You’re the glue that’s holding this all together,” the social worker pointed out. “What’s going to happen when you need care yourself?” The question prompted lots of soul searching and discussions. My husband was very supportive of my decision (he’d also wanted to donate but was eliminated) and was already shouldering more than his share, so I knew we’d manage somehow. My main concern was the added stress on him.

Throughout the donor testing—the umpteen blood draws, X-rays, a stress cardiogram, CT angiography, lung function test, and more—my nurse coordinator was just a phone call away. Knowing my wimp background, she always offered gentle encouragement; accommodations like arranging to draw as much blood at a time as possible to avoid sticking me extra times; useful tips, such as lidocaine to numb my arm for the blood draws; and, thankfully, a warm sense of humor.

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After each test I’d call her nervously to see if I’d passed. I knew that even after months of successful test results, I could still be eliminated. (I know someone who was actually eliminated the night before the scheduled surgery. She was devastated.) Hmmn, how would I really feel if I were disqualified? Would I secretly be relieved (after all, I’d tried)? Much to my surprise, I realized I’d be crushed. I’d gone through many stages of adjustment in my decision to be a donor: initial determination, wavering, a new resolve, cautious optimism, and solidly back to determination. So when the psychologist later asked if I was still sure I wanted to do this, I had to laugh. “Ohhh yeah,” I said without hesitation.