How Deciding to Donate a Kidney Saved My Own Life

When I filled out my National Kidney Registry living donation application, I hoped I’d have the opportunity to improve someone else’s life. I never dreamed I’d be saving my own.

I first considered living kidney donation years ago when my aunt was diagnosed with kidney disease. That decision was easy; I love her dearly and I’d give her any part of me if she needed it. Fortunately, she recovered without needing a transplant, but the idea lingered, popping up from time to time.

Signs at an intersection near my daughter’s high school asked passersby to register for the National Kidney Registry so a local woman might receive a much-needed donation. I saw a video about a man who walked up and down the side of a road near his home wearing a sandwich board with the message, “NEED KIDNEY 4 WIFE” and a phone number.

On a flight home from a speaking trip, I discovered the documentary Confessions of a Good Samaritan among my seatback viewing options. In the film, director Penny Lane explores the process, psychology, and ethics behind altruistic kidney donation while undergoing the evaluation and surgery herself.

Every time kidney donation faded out of my awareness, some sign came along to remind me that just because kidney donation had disappeared from my thoughts, the need for living donors had not. Currently, over 90,000 people are on the transplant list waiting for news of a donor and for many of them, chronic kidney disease means dialysis, chronic illness, and financial hardship.

The final nudge I needed came via my TikTok feed. The algorithm presented me with Chandler Jackson, or @ChandlerTheKidneyGuy. Chandler has kidney disease and makes videos to help others understand what it’s like to be a college student with chronic illness.

Through his videos, I learned about his onerous daily peritoneal dialysis routine: sanitize his dorm room and hands, glove up and mask, prime the dialysis machine, attach the cartridges and tangles of tubes, and warm three massive bags of dialysis solution. Sanitize hands, glove up and mask again before attaching the entire contraption to the dialysis port in his abdomen so he can begin the nine-hour process of using that fluid and his own peritoneum as a filtration system for the waste his kidneys can’t eliminate.

By the time I’d scrolled through Chandler’s feed, I was resolved. I would donate one of my kidneys in 2026. I likely could not donate to Chandler directly due to geographical and biological limitations, but I could gift him a kidney donation voucher that would move him up the transplant list or start a kidney transplant chain on his behalf.

My life, in contrast to Chandler’s, is much less complicated. I spent most of my time speaking in schools and community organizations about topics from my books: learning, school engagement, substance use prevention, and parenting. When I’m not on the road or writing at my desk, I’m heaving boulders out of my gardens, tending to my bees, or splitting next winter’s firewood. Relatively speaking, kidney donation would have a minimal effect on my life.

Yes, I would have to endure a fairly intense medical workup culminating in a day of testing at my closest transplant center, about four hours away from my home. If I passed that physical and psychological gauntlet, I would undergo laparoscopic surgery under general anaesthesia and spend a couple of days in the hospital. Recovery would take about four to eight weeks at home, so some time off of work would be required.

Consequently, my speaking agent was one of the first people I told about the potential donation. She shared that she, too, was intrigued by the idea of donating and promised to reschedule my existing events. If my screening went according to schedule, I might be able to donate during the cold, dark winter in Vermont, recover while knitting by my wood stove, and be ready to get back out into the garden, forest, and bee yard by spring.

Filling out the kidney donor registration form was easy. I completed it on my phone in under ten minutes while waiting for a flight home from a speaking event. A few days later, a nurse navigator from Mass General Brigham in Boston, my closest kidney transplant site, called to discuss altruistic kidney transplantation and take a more detailed medical history. Once she’d determined I was a viable candidate, she arranged my first battery of blood and urine tests through a local lab, and encouraged me to move up some of my preventative medical tests like my mammogram and colonoscopy.

For the first 55 years of my life my kidneys warranted little more than a passing thought, but once testing began I thought about them constantly. Are they healthy? Donation-worthy? I’d read that my transplant team would determine which of my kidneys is healthiest and most robust and I’d keep that one, so will I keep Right or Left? Should I name them? I’d already started to think of my kidneys as something shared, something I was caretaking for a stranger, and keeping those two fist-sized organs healthy became a bit of a preoccupation.

A week later, after I’d had many vials of blood drawn and collected 24 hours worth of my urine in a large orange jug, I drove to my local medical center for my mammogram. I even took a jaunty picture in the changing room mirror to post on my Instagram feed, captioned with something happy and encouraging like, “Don’t forget to schedule your mammogram, ladies!”

When the breast care clinic messaged to let me know I’d need a follow-up mammogram and possibly an ultrasound, I wasn’t worried. I’d needed them before, and it had always come to nothing more than irregular breast tissue density. I showed up at the University of Vermont Breast Care Center for another gown, another waiting room, and another mammogram.

I’d always been released after the repeat mammogram (“It’s nothing, just some areas of irregular density, have a great day!”), so when the team asked me to stay for an ultrasound, concern started to creep in. I masked it by chatting with the ultrasound technician about our kids as she thoroughly scanned my left breast and lymph nodes.

The technician sent me to a small consultation room to wait, and as soon as the radiologist entered the room with that concerned-yet-caring expression on her face, I allowed worry to blossom into full-on panic. I texted my husband, who was seeing patients in his clinic a few floors up, and asked him to come down to the breast center so I could have a level-headed, rational witness to what I now understood was life-changing news. 

While I waited for Tim, I picked at my cuticles and took stock of the tiny consult room. That’s when I noticed the box of tissues placed prominently on the table next to my chair, at the ready. When he arrived, I saw Tim notice it, too.

The radiologist told us I had a mass in my left breast, one that was almost certainly invasive due to its irregular, spiculated, or spiky, appearance. I’d need a biopsy as soon as possible. Once we knew what we were dealing with, she continued, I could talk with a breast surgeon about my surgical options.

No, I wanted to tell her, she misunderstood. This was not supposed to be about me. I was meant to be giving life to someone else, not weighing the mortality benefits of lumpectomy versus mastectomy.

Thirty years and another ultrasound ago, when we discovered the baby I was carrying had no heartbeat, I remember feeling a similar sense of nonsensical unreality. This is fine, I thought, my baby would be fine without a heart. We’d adjust.

Reality, in both cases, comes later. Tim and I hold hands. We talk. We question. We research. In time, I grasp the full implications of the news and my future. I’d be having surgery and those four to eight weeks of recovery, but it would not culminate in the joy of granting someone else a chance at life.

I was devastated, both for myself and for the stranger I’d already granted a small claim on my body.

And yet.

And yet.

That mammogram, a test I would not have scheduled for at least six more months, caught my cancer early. I was eventually diagnosed with invasive lobular breast cancer, a type that can be difficult to spot in its early stages.

I did, in fact, have surgery–a bilateral mastectomy with reconstruction–during the cold, dark Vermont winter, and spent much of December and January near my wood stove, knitting a very lumpy and misshapen shawl. By the time the ground thaws and the trails dry this spring, I will have healed enough to go trail running, split firewood, and heave giant stones out of my garden.

What’s more, Chandler received his kidney transplant this winter after all. Someone else stepped up around the same time I dropped out. She filled out her registration form, went through rigorous medical testing, and successfully donated her kidney. Because her donation was part of a transplant chain, her direct recipient and Chandler Jackson have a chance at life free from kidney disease.

My initial motivation for donating a kidney may have been altruistic, but in a reversal so common it’s cliché, I gained everything I’d hoped to give.