Mission: To be a resource for transplant information; to be an advocate for organ & tissue donation awareness; to promote funding for transplant research.
Wednesday, June 12, 2013
Don't take those kidneys with you
Everyone can be a superhero by donating an organ
By Cathy Evans
There are no bathrooms in heaven. That’s a bit of a presumptuous declaration on my part, as I have never visited the afterlife, nor am I psychic. But in the many books that describe the experiences of people miraculously brought back from the dead, no one ever mentions bathrooms.
Despite the lack of toilets in the afterlife, we seem to be reluctant to hand over our kidneys – or other organs – when we no longer need them. Canada has one of the lowest organ-donation rates in the developed world.
At some level, I understand – after all, it’s a gross topic of conversation. Until you need a transplant to live, and then all you can think about is those icky, elusive organs.
Waiting helplessly for the organ that will save the life of someone you love is like finding out your cruise ship is sinking and your pleasurable journey is abruptly ending. You rush your family to wait in line for lifeboats, but there aren’t enough. A primitive self, a being that you were unaware of, emerges – and all the polite manners you were taught as a child and have been true to as an adult are wiped out. You would plead, scream, bribe and finally fight like an unsocialized pit bull to get your loved one a spot on one of the remaining lifeboats.
When my 39-year-old sister was diagnosed with lung cancer, I was hit with the unfairness of it all. No one in my family smoked. We ate broccoli and antioxidant-laden fruits; heck, we even exercised.
It turns out that a healthy lifestyle doesn’t prevent the particular form of lung cancer Anne had. The doctor held out the tiniest light of hope – a possible lung transplant. But my sister would have to wait with 1,400 other people to see if an organ became available in time.
Waiting doesn’t suit me – I am a doer, a problem solver, an action-oriented person. In the face of possible tragedy, I wanted to be my sister’s hero, swooping through the medical system to find a solution to this horrible situation.
I am no stranger to the world of superheroes. Like Walter Mitty, I escape the mundane routine of life by dreaming that I can fly about the city in a mask, red satin cape and flattering spandex tights, saving lives. In my fantasies, I have rescued a man, coincidentally handsome, trapped in a burning building as he crouches on the floor, coughing and gasping. I have jumped into a swimming pool to haul out a drowning child. I’ve never shared these fantasies with my family because frankly, even to me, they sound childish and narcissistic.
There was no role for me as an action hero on the transplant circuit. It was all about waiting: waiting in doctors’ offices, waiting for X-ray and chemotherapy results, waiting for therapy, and waiting for my sister to laboriously walk a few steps to the wheelchair, gasping for breath, as we sorted out the oxygen lines. And, most frustrating, waiting for her to be at the front of the organ lineup.
Finally, after endless hours spent staring at the silent mobile phone, the call came, and hope in the form of shiny, healthy, pink lungs arrived.
Anne had waited a year for the lungs that would prolong her life. During that time, I learned to be patient, to pause and appreciate the joyous moments of life – skating with my nephew and niece, just sitting still, quietly talking with my sister – instead of scurrying around like a rat trying to find its way out of a maze.
On the evening of the transplant, Anne was close to death. The hugs and kisses in her hospital room were sprinkled with tears and promises. My sisters and I vowed we would help with her children, finish the award nomination for her surgeon and, if the transplant didn’t work, bury her in the pretty, violet-blue outfit she had bought in Paris the previous summer.
My sister had three precious years after the double lung transplant. When people tell me three years is not much time, I point out that it is how we live the minutes, the hours and the days that counts.
Three years is infinity if it is filled with children’s laughter, birthday celebrations, drives in a sports car with the top down, and pink tulips emerging from the damp ground every spring, full of promise. It is time to write journals and stories, take photographs and carefully select gifts for the children to unwrap on special future occasions to remember how much they were loved by their mother.
I no longer fantasize about flying from a rooftop in my tights to save a life. I can’t pretend spandex and red capes are important when I encountered so many authentic heroes in the transplant world – patients who drew upon unknown depths of courage; stoical families, selfless donors, and physicians and nurses who tirelessly dispensed cautious hope in the face of tears.
On the Christmas Day before my sister died, she handed me a flat box wrapped in glittery silver paper. I opened it carefully to find a personalized licence plate: “My Hero.” It hangs framed in my office, reminding me that I don’t need tights or a cape to be courageous in life.
She died in April, which is National Organ and Tissue Donation Awareness month.
There are no bathrooms in heaven, so you won’t need to take those kidneys with you.
Cathy Evans, PhD, MSc, BScPT
University of Toronto
Dept. of Physical Therapy
Thanks to Cathy Evans for submitting this guest post about her sister Anne Barbetta, who I knew very well. Anne was a successful fundraiser for transplant and cancer research and a promoter of organ & tissue donation.
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