Heart to Heart

Life—it’s a waiting game. Our minds routinely journey into the past, but we also spend considerable time looking into the future. Anticipating events like the birth of a child. Awaiting the results of an important exam. Begging for the end to a long and difficult night.

I’m waiting for a heart.

Not too long ago I was “listed,” placed on Alberta’s cardiac transplant waiting list. I’ve entered the end stage of a heart disease called ARVC—arrhythmogenic right ventricular cardiomyopathy. The ailment has been around for centuries, but was only recognized as a distinct medical condition in the early 1980s. In a process of programmed cell death, fibrous/fatty tissue takes over the healthy heart cells, staging its invasion from the right ventricle. The rogue cells can trigger rapid heart rhythms that lead to sudden cardiac death, especially in the young and the athletic. To offset this risk, I have a cardiodefibrillator unit implanted in my chest.

No one is born with ARVC, but the disease may be present at a young age. I have struggled for decades, under various diagnoses, with an arrhythmic heart. Hindsight allows me to isolate a possible early sign. Picture me as an eight-year-old, at the edge of a swimming pool in a leisure centre, my chest tight with exertion. An instructor, jabbing a finger in my direction, sends me back to the previous level of swimming lessons while the other members of my group advance to the higher level. I always felt short of breath exercising in water, and never did learn how to swim.

Other memories come to the surface. I did well on level terrain for decades, running to catch commuter trains, playing tennis, handling my exuberant dog. I got quite short of breath during these types of activities, but I simply accepted the need to expend more effort than others. By my forties, however, I was making frequent stops on mountain hiking trails or paths to hill-top fortresses, ostensibly to take photographs or to admire the scenery. Soon, the people who accompanied me were literally pushing me, bracing their arms against my back, taking turns to march me up those pesky slopes.

Exciting as a successful heart transplant may sound, it’s not a cure. During my lengthy evaluation for eligibility by the Cardiac Transplant team in Calgary, team members reminded me on more than one occasion that I would be “exchanging one set of problems for another.” Like all transplant patients, I’ll need to take anti-rejection medications for the rest of my life, and these may come with side effects. My compromised immune system may not be able to ward off certain infections, and I’ll even start developing coronary artery disease of the new heart. I have never doubted for one moment, though, that I would assume all the risks. I’ve even made up a post-surgery bucket list, one that highlights activities that I’ve done before. I dream of carrying sleepy grandchildren upstairs and to bed, writing another novel, beachcombing for stones and sand dollars on Nova Scotia’s disparate shores. Above all, I want to be a helper for my family and for my friends, not a burden. Maybe I’ll decide to revise that list in the future, but those are my wishes for now.

A new heart. A new beginning. Right now I’m considered low priority (still living at home and functioning without the assistance of a medical device). If my condition worsens my status will change, but it still may take one to two years before a heart becomes available for me. Since we rely on choice and altruism for organ donations in this country, they are a rare act. I believe it’s a system that suits us culturally, but it requires extensive improvements. Raising awareness through education is important, as are administrative advances. In Alberta, for example, a bill that provides for a provincial agency for organ donation, as well as an online donor registry, is expected to become law during the fall sitting of the legislature. It’s hoped that this new system will help trim waiting lists.

Organ donors are typically people who have suffered irreversible brain trauma (through an event like a stroke or an automobile accident) and have been placed on life support, something that occurs in only 1% of deaths. Even if someone gives consent through a signature on a driver’s licence or a healthcare card, family members may veto the patient’s wishes. If you are committed to the concept of organ donation, please discuss this with your loved ones.

I’m acutely aware that the promise of renewed life for me signifies the end of life for someone else. One circle of family and friends will be suffering loss, whereas my special circle will be celebrating hope. It’s a solace to know that the gift of donation helps family members find positive meaning in the loss of their loved ones.

Someday we’ll usher in an age of sophisticated mechanical hearts. Or, we’ll reap the benefits of stem cell therapy. Right now, however, I am registered to receive a human donor heart.

I’m waiting for that incredible gift.

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