The Greatest Gift: What’s Inside?

In my last post, I shared how the idea for our book came about and promised some information on what’s inside and why.

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Our ultimate goal in writing The Greatest Gift: The Insider’s Guide to Living Kidney Donation, of course, is to highlight the desperate need for living donors and to encourage people who might not have considered donating to think about whether they could be a donor. 

Overwhelming statistics—like 100,000 people on years-long wait lists for a kidney and fewer than 20,000 transplants performed each year—become more understandable and meaningful when they are presented in terms of individuals’ firsthand experiences. Besides sharing our own stories and lessons learned, we decided to include other perspectives, with first-person accounts of people personally or professionally involved in the donation or transplant process: donors and recipients, of course, but also family members, a caregiver, a family therapist, a volunteer advocate, a transplant nurse coordinator.

From the beginning, we were on the same page in wanting to provide thorough but accessible, nontechnical and multifaceted information for both donors and recipients. We were mindful that families, friends, and acquaintances of kidney patients are the best source of potential living donors and are certainly the backbone of the patients’ support system.  In assisting donors, we reasoned, we would clearly be helping patients, too. We also wanted to reach both readers who already planned to donate or to be a recipient as well as those just exploring the idea. We initially drew mostly on our own experiences in raising issues to be considered at all stages of a donation or transplant. In recent years, as we became immersed in the burgeoning kidney-support and living-donor communities, we were able to learn what “real-world” questions others were raising in workshops, Facebook groups, and online forums.

Within these parameters, we each had our own personal motivation and goals for the book. Betsy was particularly interested in addressing emotional and family issues, how a transplant might affect you personally and the impact it can have on your loved ones; as a self-described wimp who feared the donor’s medical evaluation phase as much as the surgery itself, I wanted to provide details on tests and interviews to support and motivate others who might be similarly hesitant.

Although our experiences overlap, the reality is that potential living donors and transplant recipients have inherently different journeys. Living donation, by definition by a healthy individual, is of course a choice; transplant, on the other hand, though technically a choice, is usually a critically needed and wished-for prospect for someone with end stage renal disease. Dialysis helps patients maintain some of their kidney function while awaiting transplant, but it cannot offer the same quality of life and long-term outcomes as a new kidney. The decision to seek a transplant and the steps in the process are determined by a patient’s individual medical needs and circumstances. The medical issues naturally dominate, so frequently family and emotional considerations are given short shrift.

That’s why we have a detailed chapter on thinking through the decision to donate and the step-by-step process: what to expect and ask along the way. For recipients, we focus on the often-overlooked nonmedical aspects of having a transplant and on the emotional consequences of neglecting these important issues.

 Because we fully recognize the enormity of a decision to donate or have a transplant, we encourage everyone to consider the myriad factors that go into such a decision. We hope that having all the information contained in our book will empower readers to be informed consumers because information is power—never more so than in matters of health.

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.  

5 Truths about Becoming a Living Kidney Donor

There are still many myths about what’s involved in donating a kidney, and here are a few. I first included these in an article in 2017 and have already needed to update a couple of them because many aspects of the process have gotten easier. How many of the questions can you answer correctly?

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True or False: The surgeon removes a rib to get to the donor’s kidney.

False: Thanks to minimally invasive laparoscopic surgery (the standard of care), I had two tiny slits and a three-inch bikini incision.

True or False: Donors must be young.

False: More than a third of living kidney donors are over 50. It’s the health of the kidney–plus the donor’s overall health–that counts. I was 58 when I donated mine.

True or False: Donors stay in the hospital for a few weeks.

False: A typical stay is now 1 or 2 days.

True or False: Donors need to miss work for 3 to 6 months.

False: I could have gone back to my sedentary job as an editor in 2 or 3 weeks. A laborer might need a couple of months.

True or False: There’s no turning back.

False: You can change your mind at any point.  My transplant nurse coordinator, social worker, psychologist, nephrologist, and transplant surgeon all assured me that I could.  My son would be told only that I had been eliminated.

I just discovered an embarrassing glitch (aka technological error) in this brief post, so I’ve corrected it and reposted. It’s drawn (and updated) from an earlier, longer post I wrote for WELD’s blog. The original 2017 article appeared on the National Kidney Foundation website.