My kidney donation story starts with my grandmother. By the nature of polycystic kidney disease, it must have started with my great-grandfather before that, but he died when she was still a small child, so we don’t know how it might have affected him.
My grandmother had a transplant in 1995 when I was just a toddler. She was listed for less than a year, received a deceased donor kidney, and at the time my dad started getting sick in 2018, she was still living independently in her 80s.
This was the extent of my awareness of PKD in the family growing up. We had to be extra careful to wash our hands at Grandma’s house, but otherwise, she, my dad, and my aunt with the disease all seemed like normal, healthy adults. I had a vague awareness that my brother, sister, and I could have PKD too, but from what I could see, the diagnosis didn’t seem too scary. We never got tested out of concern for increased insurance premiums.
In 2018, my dad’s slowly declining kidney function crossed into “end-stage renal disease”. His nephrologist referred him to UVA, and he began preparing for his transplant eligibility evaluation when I moved home from teaching English in Morocco to hike the Appalachian Trail. In the months before my April start date, Dad and I went to the YMCA together three mornings a week. He lifted weights while I went to yoga, and then we walked and jogged on treadmills side by side.
He reached his goal weight– 199lbs on his 6’1″ frame– the morning of his appointment. I started the Appalachian Trail and hiked 2,190 miles from Georgia to Maine while Dad went through test after test. He wasn’t on dialysis yet– in fact, besides blood pressure medication, he was the picture of an active retiree in his late 50s.
When I came home from my thru hike, my parents shared grim news. Grandma had only waited 10 months for her kidney, but nowadays? In our region? The wait for a Type-O kidney was 7-10 years. I looked up the survival rates of dialysis. Fifty percent were dead within just three years.
Dad was still firmly against receiving a kidney from a living donor, especially one of his children. But the numbers were against him. He was unlikely to survive long enough to get a deceased-donor kidney, and that was if the boredom of dialysis didn’t kill him first.
I contacted UVA about donating, and I went through the first few tests without my Dad’s knowledge. I failed the 24-hour urine collection the first time, and my creatinine was a little high. At first, this caused us to worry that the kidney infection I’d experienced on the AT had done more damage than it seemed. Then, my coordinator, Anita asked on the phone, “This may sound like an odd question, but are you… muscular?” Anita and I had never met in person. She didn’t know what I looked like, only my height, weight, and age from my physical. She explained that creatinine scores can be high when a person puts on a lot of muscle in a short time. I thought about climbing mountains every day for six months on the Appalachian Trail.
“Not to brag,” I joked, “but… yes?”
She ordered a second round of tests and encouraged me to stay extra hydrated. This time, my numbers qualified me as an initial candidate for donation. Around this time, I moved to New Hampshire for a new teaching job closer to the partner I’d met on the AT, so I continued the testing process through faxed lab orders from UVA, carried out at my local hospital in NH.
My brother and sister and I eventually managed to convince our dad to consider living donation. He was unwilling to ask anyone, especially us, to sacrifice their potential health for him, but we tried to reframe the situation. He could serve his family better, we argued, as a healthy, active father, husband, and future grandfather who lived into his 80s than if he only lived a few more years, spending much of that time hooked up to dialysis. He still had two daughters to walk down the aisle someday. He needed to be around to meet his grandchildren, to take them on tractor rides, and teach them how to water ski. He couldn’t leave Mom to grow grapes and take care of the dog alone. Eventually, he realized we were right.
In June of 2019, I traveled from New Hampshire to UVA for more tests, including a psychological evaluation and genetic counseling, and testing to see if I had PKD. I got the results back in late August after a summer of my heart hammering any time my phone rang. It was a coin flip, after all: a 50/50 chance that I had the gene. I remember excusing myself from a staff meeting the week before school started to take the phone call. Negative. I re-entered the high school theater still teary-eyed. I had a date. Pending the remaining tests, I would give my dad a kidney on 12/12/19.
There were a few more hurdles– an initial failed cross-match, and then a lab error that nearly canceled the surgery when the final blood-borne disease panel revealed a false positive for Hep C– but ultimately, the procedures went ahead as planned. My left kidney was successfully transplanted into my dad on 12/12/19.
Physically, the first week of recovery was harder than I expected, and then everything after that was easier. Dad and I both spent three nights in the hospital. After the first day, we competed in “races” around the unit, hobbling down the hallway with walkers. We wore socks and hospital gowns, Dad with his ever-present Florida Gator hoodie overtop. My boyfriend flew from Montreal to visit me in the hospital. When he hugged me and told me he was proud of me, I wept.
My incisional pain was moderate, but it was overshadowed by the unexpected laparoscopic gas pain in my shoulders. For several days, it hurt to lift my arms, and they ached even at rest. But right away, I could stand, walk, eat, and use the bathroom. Sitting up, sneezing, and laughing too hard were painful.
The day before the transplant, I recorded my 5k time on the sidewalks of Charlottesville. It was 32:30 (I’m a hiker, not a runner, after all). After the surgery, I wanted to beat that time.
I have always been active. In high school, I played soccer, swam, and was in the marching band. I was also an avid equestrian and hiker. When I lived in Morocco, I’d taken up surfing and CrossFit. In 2018, I became a thru-hiker. In 2019, I began running in an effort to maintain my thru-hiker fitness. I went on my first little post-op hike on Christmas– a one-mile walk on the path behind my parents’ house– and by the New Year, I could stay on my feet for a few hours at a time.
I went back to work at 2.5 weeks post-op. I still couldn’t lift much, so I wheeled a tiny suitcase around the school like a flight attendant. I got groceries delivered so I wouldn’t have to carry shopping bags across icy parking lots in the New Hampshire winter. Each day after school, I went to the gym and walked on the treadmill as I waited to get stronger. I tried running at 4 weeks, but it caused abdominal pain. I waited ten more days before trying again and found I could jog without pain. In slow, gentle intervals, I began running again. All the while, my dad was recovering well in Virginia.
Little by little, I healed. I tried to be patient, but I was itching for the weather to warm up, for my body to be ready to run and hike again, and for my boyfriend to get back from visiting his brother in New Zealand. January seemed to stretch on endlessly, much longer than a normal month. Soon, I told myself. If I can just wait out the winter, all of the stress of donation and recovery will be behind me. I will be back to normal, my dad will be healthy, and everything will be perfect.
Well. It goes without saying, but the spring of 2020 did not go as I planned.
I continued to recover well from the surgery, but the rest of my life– and the world– was upended. In the span of a month, I ran my first continuous mile post-donation, my boyfriend suddenly left me, my school district shut down and switched to remote learning for COVID, I was hired for a new job starting that summer, and that new job was promptly canceled (again: COVID).
I moved back in with my parents. I left New Hampshire partly so I could look after errands for my extremely immune-compromised dad, and partly so that my parents could look after me in the wake of the devastating breakup.
During this time, teaching remotely from Virginia, running became my lifeline. I had nothing else. Because of the pandemic, I couldn’t take shelter from my shock and loneliness in friends or work or new hobbies. So I took shelter in mileage, pace, and route-planning. I was miserable, but I was getting faster. I broke 32 minutes, then 30 minutes, then 29.
At the end of the school year, after struggling with remote teaching for months, I decided to take a break from education and leap into the outdoor industry. I joined a conservation crew working on trails in Arizona, Wyoming, and New Mexico. Just six months after my donation, I hefted a 50lb pack and worked for eight days at a time in the backcountry, clearing fallen trees with giant crosscut saws. The work was extremely physically demanding, but I liked it. It was straightforward and tangible. To my surprise, my post-transplant body handled it without complaint.
For me, the mental and emotional recovery from the kidney transplant was more challenging than the physical recovery. I was lucky– I did not experience hernias or fatigue or infection. Although my creatinine remained a little too high– even today, it sits around 1.7– I felt fine. I pushed my body hard, working ten-hour days at 9,000 feet of elevation in the wilderness, and I was okay… physically. Mentally, it was hard to accept how drastically different my post-transplant life was than I had anticipated. Of course, most of those changes were due to the global pandemic starting and my relationship ending, not because of the donation. Nonetheless, it was hard to disentangle these major events in my mind. I’ve never consciously thought or felt like donating a kidney means I am entitled to getting my way. I didn’t do it because I wanted to deserve things– I did it because I wanted my dad around for a couple more decades instead of a couple more years.
Still, it was hard to accept how much I had lost during my months of recovery. Jobs, home, a future with the person I loved, all during a global health crisis. It felt wrong. My dad was supposed to be able to return to a semi-normal life, but instead, on high doses of anti-rejection meds, he was cloistered at home, highly vulnerable to the deadly first iterations of the virus. Every day, I lived in fear that my dad would catch COVID and die, and my sacrifice would be for nothing. I had done the bravest and most generous thing I could do, and it seemed like we were all being punished for it. It just didn’t feel like how the story was supposed to end.
Of course, the story wasn’t over and still isn’t. Life went on. My dad was healthy and active. I continued running and competed in a virtual half marathon on the first anniversary of the transplant. After 9 months of clearing and building trails, I began working for REI as a multi-day adventure guide, leading hiking trips in Utah, Arizona, and Southern California.
It has taken me a long time, but I am learning to accept that post-transplant life is different, but okay. The hard work that goes into qualifying for and following through with a kidney transplant does not automatically mean that circumstances will “go back to normal” afterward. Somehow, I had mentally prepared myself for the physical complications that could arise from the surgery– I had researched all kinds of negative outcomes, memorized the statistics, and accepted those risks– but I wasn’t prepared for the life complications that actually happened. Of course, no one was prepared for COVID.
Throughout the whole donation process, I had another goal: to one day complete a second thru-hike. While recovering from surgery, I read Thirst, by Heather Anderson, and dreamed of the Pacific Crest Trail. In 2021 the pandemic still presented too many obstacles, but in 2022, the timing felt right.
I am currently over 1500 miles into the PCT. I hike anywhere from 25 to 30 miles per day, making my way from Mexico to Canada. Besides requiring an additional focus on hydration and forgoing NSAIDs for muscle aches and pains, I am like any other thru-hiker. Having one kidney is an afterthought. My body eats miles for breakfast, lunch, and dinner.
My first two years post-transplant were chaotic and challenging. I never once regretted donating, but I wrestled with my expectations and how life had laughed at my plans and torn them to pieces. But nowadays, the important things are still right. My parents run a tiny vineyard and winery, and my dad mows grass and tends to grapes instead of going to dialysis three days a week. Six months ago, my brother and his wife had a baby. My dad met his first grandchild, and that kid has four healthy grandparents who dote on him, not three.
And me? I’m on the Pacific Crest Trail. And it feels like exactly where I’m supposed to be.
You can read more about Sibley’s journey on The Trek, or on her Instagam at @possiblyhiking.