Waiting for an organ transplant puts life on pause

The Waiting Game
Waiting for an organ transplant puts life on pause
September 17, 2010

Barbara Turnbull
LIVING REPORTER

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Helen Sklarz is ready. She has been waiting seven years, after all.

She dreams of the day she can drink as much water as she wants, “gallons and gallons and gallons of water.” She can’t wait to travel again. As soon as she has the energy, she will make stained-glass art.

All Sklarz needs is a kidney to free her from the unbearable tether of the dialysis machine. Three times a week she devotes five hours a day to the treatment that removes salt, toxins, and fluid normally filtered by kidneys.

Some days, the 57-year-old Toronto resident thinks about giving up. No more 20-minute drives to Sunnybrook Hospital, no more needles plunged into a vein in her upper arm, an end to the continual hum and ringing of the machine as it cycles her blood in and out of her body as many as 95 times a session.

It would take about 10 days, then she would go into a coma and die.

Then again, she never thought she would go on dialysis after watching her father endure it for three years before he died, at age 83, of the same disease she inherited: polycystic kidney disease. But at 50, when her kidney function was 10 per cent, she agreed. Her name was put on the list for a transplant.

“There is a very strong will to live under really adverse circumstances,” Sklarz says. “It’s innate. I don’t know what it is, but it’s there.”

And so she is ready. When the call comes, she has a list of people who will help. A friend will drive her to the hospital, and a neighbour will look after her beloved wheaten terrier, Jake.

She just doesn’t know when or if it will happen. In August, St. Michael’s Hospital called to say they had a kidney and she was one of three possible recipients. After waiting by the phone all day, she learned she was not the best match and the organ went to someone else.

That’s why Sklarz also has $70,000 U.S. in the bank, money saved from her part-time job and converted to U.S. dollars when the exchange rate was favourable. She has a $40,000 credit limit on her credit card. And the bank has agreed to give her a loan to cover such a massive balance should she get the call from Buffalo, where she has been on the waiting list for a kidney transplant for two years. The post-war bungalow she inherited from her parents in 2005 is collateral.

It would cost $110,000 U.S. for a transplant at Buffalo’s Erie County Medical Center, which includes medication, the cost of a a bed in the Intensive Care Unit, the surgeon’s services, the anesthesiologist, lab work and follow-up care. She agonizes over that choice.

“What if a call from Buffalo comes in a month or two months or even six? Do I take it knowing it’s a sure thing, but at great cost? Or do I try to wait it out?” she asks. “This is not what I want to do. I’ll have to work until I’m 80 (to pay off the debt), instead of retiring.”

OHIP will not pay for any part of her procedure if it’s done outside Canada, although it would save tens of thousands of dollars annually in dialysis treatments.

If she moved to London or Ottawa, Sklarz would have a new kidney by now. That’s because Ontario is the only province without a central waiting list, and kidneys are allocated within the five regional transplant centres: Ottawa, Hamilton, Toronto, London and Kingston.

Toronto has the longest list and the shortest number of donors in Ontario, according to Dr. Jeffrey Zaltzman, director of the kidney transplant program at St. Michael’s Hospital and medical director of transplant for Trillium Gift of Life Network, the provincial agency charged with matching organ donors and recipients.

“The wait times are long and they are unequal, but there has been some improvement,” Zaltzman says. “We need more donors.”

In the Greater Toronto Area, 671 people are waiting for a kidney. Last year, 187 people on the list got a transplant (which includes people who got a kidney and pancreas at the same time and those who got a kidney from a living donor). And the GTA has the lowest percentage of citizens who have registered as donors in the province at a little more than 13 per cent.

In Ontario, 1,093 people of 1,525 on the organ transplant lists are waiting for a kidney. That’s because dialysis can keep them alive for as many as 30 years, so they live longer. The other ones — those waiting for hearts, lungs, livers — die waiting so the lists are shorter.

But waiting has its dangers. Some people are ineligible for a transplant because dialysis makes patients more susceptible to cancer, heart disease and vascular disease.

“Your health deteriorates every minute you’re on that machine,” says Sklarz. “It’s just gruelling to wait … to get better, when I know that things are slowly getting worse.”

She could get a kidney from a living donor, but no one has offered to be tested to see if they’re a match. She understands why and doesn’t judge.

As it is, Sklarz’s body no longer makes urine — “I’m great on a long car trip,” she quips — and that means her intake of fluid and certain minerals is severely limited.

She can have one litre of liquids a day, which includes soups, sauces and vegetables. She has to avoid dairy, chocolate, beans, nuts, seeds, whole grains, and most fruits. The more she takes in, the harder dialysis is.

“It’s probably, I would say, one of the most difficult diets of any medical problem,” says Dr. Alireza Zahirieh, the nephrologist Sklarz sees at Sunnybrook. Phosphorus and potassium — found in most foods — pose the biggest problems. Dialysis can’t clear out high levels of these minerals, which can result in heart attacks, stroke or loss of limbs.

“The diet is supposed to help with that, but it’s so restrictive that most people have a hard time sticking to it,” says Zahirieh.

Moving is not an option for Sklarz, a part-time fundraiser for the Spina Bifida and Hydrocephalus Association, who lives alone with Jake.

She has no parents, siblings or children and relies on a small support system of friends, on whom she relies for everything from moral support to cooking and household chores.

Ruth Abrahamson, a close friend for 20 years, says the financial load is hard for Sklarz to bear.

“This all impacts her life tremendously and I know she finds it a burden, but she minimizes it to the outside world.

“She doesn’t spend time saying ‘Woe is me.’ ”

Reach Barbara Turnbull at bturnbull@thestar.ca or @barbturnbull on Twitter.

http://www.healthzone.ca/health/newsfeatures/organdonation/article/862696--waiting-for-an-organ-transplant-puts-life-on-pause