Everybody Has a Story: Precious gift keeps giving

By Colleen Burch, Mount Vista Published: February 5, 2023, 5:04am

In November 2013, I was a healthy and active 56-year-old woman. A mountaineer, rock climber, telemark skier, sea kayaker and scuba diver. But, out of the blue, a few of my heartbeats skipped merrily out of sync, marking the beginning of a slow decline and leading eventually to heart failure and a heart transplant. I write this to convey what a diagnosis of arrhythmogenic right ventricular dysplasia, also known as ARVD, meant to me as an active person. This is a disease that attacks the electrical system and muscle of the heart, causing dangerous arrhythmias that may result in sudden death with little or no warning. Little evidence of these cardiac abnormalities exists, which makes treatment of the disease challenging. First, I had a surgical procedure to install an internal cardiac defibrillator, which allowed me to continue to pursue outdoor experiences. It occasionally shocked my heart back into a normal rhythm, saving my life. But soon, the disease progressed to rapid heart failure, leaving me with barely enough energy to pick a weed, let alone take a walk. A heart transplant was the only option. Lying in a critical care bed, I began to talk to my heart each night before falling asleep. Putting my hand over my heart, I divulged how grateful I was for its wonderful companionship over 58 years. It had pumped ferociously and steadily as I climbed all those mountains. It made me strong and exhibited great endurance. I was not angry at my heart for giving up now. It was weary. And, like a companion, I would give it love until it was taken away from me. I asked one last favor of my heart: Please stay with me a little longer until I can get a new heart. We can take it slowly, at your weary pace. I need you for one last climb and then you may rest for eternity.

On the day of transplant, the cardiac surgeon discussed surgical expectations. He stated that I had a virgin chest, meaning no previous surgeries nor a left ventricular device, like most other patients awaiting transplant. I was also quite petite, without excess tissue to interfere with the procedure. In fact, he laughed and said he could perform my surgery blindfolded and with two arms tied behind his back because I was such splendid candidate. I returned a quip of my own. I wanted him to use all his skilled senses, eyes wide open and dexterous hands diligently stitching and wiring. I also asked him to promise me that when he removed my old heart, he would treat it with respect and say goodbye for me. The thought of my old heart being merely discarded bothered me. It was my good companion, not simply an organ. Maybe it could continue to be useful by participating in ARVD research. On June 1, 2016, I received a new heart from a gracious family willing to help a stranger continue to live. The day following surgery, I was strong enough to sit in a chair. By the end of the second week, I was walking almost a mile in the hospital’s hallways and climbing stairs. Hope filled me as I regained strength. The new heart and I adjusted to each other better than my transplant team anticipated, without any signs of rejection. After discharge from the hospital, my initial home recovery went smoothly. My principal focus was learning careful management of immunosuppressant medications to prevent organ rejection, as well as other medications necessary to minimize side effects of the immunosuppressants. This was a big deal for someone who had never even taken vitamins up to that point.

A secondary focus was avoiding situations or people who put me at risk for infection, which could lead to organ rejection and death. These avoidances were challenging while engaging in normal daily activities. I took long walks in our neighborhood and along short trails in natural areas. My willpower enabled me to bounce back quickly. There was little need for a formal exercise program. I used local trails to advance my recovery and learned how to pace myself at a normal heart rate for a transplant patient, about 100 beats per minute. Two months after transplant, I had the strength to return to the mountains, hiking to the base of the Middle Sister and climbing Broken Top Peak in Oregon’s Three Sisters Wilderness. I felt like my old self once more. Critical rejection milestones — three, six and 12 months — passed without signs of organ rejection. I have resumed putting a hand on my heart, thanking it for life and taking it on excellent adventures, which it almost lost the opportunity to enjoy before my body gave it a new home. I do not consider my new heart an alien. It is welcome part of my body. Many people helped me during this journey — my husband and other members of my family, friends, excellent medical professionals and the heart donor and their family. As I have done so many times during alpine climbing, I’ve depended upon trusty companions in critical circumstances. We were tied into the same rope forming a common bond — and I was “on belay.”

My new heart, this precious gift, is truly one that keeps giving. We’ve now shared almost seven years together without problems. I have visited the summits of 77 more beautiful mountains and I hope to visit many more. My new heart thrives within a cage of cardiac muscles and ribs. It issues a strong, syncopated rhythm — a message of hope that reverberates between my mind and soul, reminding me that I am “on belay.” Everybody Has a Story welcomes nonfiction contributions, 1,000 words maximum, and relevant photographs. Send to: neighbors@columbian.com or P.O. Box 180, Vancouver WA, 98666. Call “Everybody Has an Editor” Scott Hewitt, 360-735-4525, with questions.

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