Wednesday, April 08, 2009

Burden of guilt

I just returned from a seminar where lung transplant recipients told "stories" of their second chance at life, and Karen Nicole Smith's story, although from a kidney transplant perspective, is not much different than the stories that most organ transplant recipients have to tell. Here Karen does a wonderful job of telling her story and expressing her feelings.

I'm losing my donated kidney. Have I done enough with my life to prove I was worthy of this gift?

By Karen Nicole Smith The Globe and Mail

It's one of the rare days when my peritoneal catheter hurts. A soft, malleable tube surgically implanted under the skin near my navel, the catheter extends down into my abdomen. I will eventually use it to do dialysis.

I begin my day with a round of anti-rejection medications and slip in two extra-strength Tylenols for good measure. As I leave my house, I throw the whole Tylenol bottle into my purse. There is life to attend to.

I live as though I'm not poised to begin dialysis. The catheter symbolizes the gravity of my health concerns. Today the symbol is like a giant, neon awning. Most days it's so quiet I can forget it's even there.

I am losing my donated kidney, despite doing everything my doctor's told me. It's functioning at less than 13 per cent. The party is over. I represent the side of organ and tissue donation rarely mentioned. Donated organs have a life span — they are not necessarily forever.

It was my decision to get my catheter even though I'm not sick enough to do dialysis yet. With it in place the transition to dialysis need not be a traumatic emergency. When I begin to feel consistently unwell I will inform my doctors and together we will take the steps necessary to start. I do not feel consistently unwell yet.

I like to imagine that I have some control in this situation. My body reminds me otherwise. A part of me is always listening inward. Concentrating, judging, weighing whether my pains and feelings are worthy of alarm. A ticking time bomb. Will this round of blood work be bad enough for my doctor to advise me to start? Will today be the day I begin dialysis again?

In my late teens, I was diagnosed with chronic kidney disease. By my early 20s, I suffered complete kidney failure. I remember feeling very tired. I remember not having any appetite. I remember my doctor's attempts to keep me well — medications, chemotherapy, diet restrictions. I also remember when dialysis became inevitable.

On dialysis, my energy level remained low, I suffered chronic infections and I was gravely anemic. But it extended my life long enough for me to have my transplant. A means to an end. I always remind myself that at least I have this life-preserving option.

Thirteen years ago, I received a phone call from the hospital — they had a kidney for me. I was overjoyed and in shock. Beyond a lottery-winner moment! I waited a short three years to get that call, a blessing because many people die waiting for organ transplants.

When I woke up in recovery in the early hours of Aug. 23, 1996, at the Royal Victoria Hospital in Montreal, it was a rebirth. Even through the pain of a six-hour kidney transplant surgery, I felt better. Life had been restored.

I was filled with a rush of positive, unbounded momentum. I quit McGill University, where I was studying sociology, to go to theatre school at Dawson College. I moved to New York. I acted (and starved) with the Yale and Juilliard grads. I moved back to Canada to continue acting. I quit acting and moved to Atlanta, close to childhood friends. I worked as a wardrobe stylist on music videos and wrote for television. Eventually I came back to Canada to complete my undergrad in sociology.

In between the career changes and moves, I partied. Made amazing friends. Travelled. Got my heart broken. Broke a few hearts. So why, as I reflect on my time with my donated kidney, am I not sure I've done enough to prove I was worthy?

My feelings of guilt began vaguely. At first I could dismiss them by recounting an adventure or an obstacle I'd overcome. I'd think about the anonymous donor who had signed an organ donor card, and I'd reflect on how in a small way they were still alive in me, accompanying me on my journey.

At its worst the burden was recounting my day as I tried to fall asleep — weighing whether I had done enough to be worthy of having that day. Many nights I judged that I hadn't and lay awake disappointed with myself, frantic about doing better.

But what accomplishment could symbolize how much I appreciate a second chance at life? What would be enough? Topping Obama and becoming the first black, female president? Maybe if I had won an Oscar? A Nobel Prize? Lowered the incidence of AIDS?

Part of me is proud of what I've made of these precious 13 years. I may not have been able to do as much with my life if I had been sick and hadn't had my transplant. At my best, I've lived like I didn't have all the time in the world. I knew my kidney was not something I could count on forever.

My guilt will always haunt me though. It was a phenomenal gift and I feel an overwhelming sense of gratitude. How many times have we agonized over a call or a thank-you note trying to capture just the right sentiment over a navy-blue sweater?

As I approach dialysis again, the benefits of my donor kidney continue. With the help of medication it will contribute to kidney function in combination with dialysis. No mourning yet.

Once again I will be put on the organ transplant list. I will join thousands of other Canadians waiting for a phone call, in my case hoping for a second lottery-winner moment.

In the end I have to believe my renewed vigour was a sufficient tradeoff for this gift of life — with or without an Oscar to show for it. I am working on it.

Karen Nicole Smith lives in Kingston, Ontario

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

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