Kidney transplants offer freedom from tyranny of 'life-support' dialysis

[okarol]

Kidney transplants offer freedom from tyranny of 'life-support' dialysis

 
BY BRUCE DEACHMAN, POSTMEDIA NEWS DECEMBER 28, 2011

A West Quebec heart recipient pauses every time she takes her anti-rejection medicine — twice each day — to think of the young man whose accidental death 22 years ago gave her a second life.

An Eastern Ontario woman always carries with her a letter written by the mother of the 12-year-old boy whose lungs now keep her breathing.

An Ottawa teenager, meanwhile, is simply too busy catching up, now that he has a new liver, to spend a great deal of time looking back.

Francois-Rene Dussault, a 41-year-old Department of Justice lawyer who's hoping his second transplant proves more successful than the first, says he tries to remember his donor every day, but it's a task easiest to do when he's giving his new kidney a good workout.

"It sounds a bit stupid, but I think of that person when I pee sometimes," says the Ottawa resident.

"I hadn't peed for five years, and when I get a huge urge, I'll say thank you. I see this liquid, and all the work I needed to do to get that liquid out of my body through dialysis, and now it's just natural, in two minutes.

"I try to thank that person every day, and his or her loved ones," he adds. "It's through this person that I'm able to live a life free of dialysis, be healthy and do the things I want. It's the most precious gift I ever got."

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The kidney is the most commonly transplanted organ. Of the approximately 860 transplants completed so far this year in Ontario, 470 have been for kidneys.

It is also the most needed operation, with 1,100 Ontarians on the kidney waiting list, more than twice the number waiting for all other organs combined.

"The waiting time gets longer every year," says Francois-Rene. "More people are suffering chronic kidney failure due to diabetes and high blood pressure. Those are the two main factors."

That said, he adds, because more people have better access to dialysis, there are also more older people who are fit enough to receive a transplant.

Francois-Rene first suffered a urinary infection at the age of three and, after numerous tests at different hospitals, was diagnosed with Alport syndrome, a rare genetic disorder that causes chronic kidney disease and eventual renal failure.

His parents were told that he would likely experience chronic kidney failure by the time he was 30, and would then require dialysis. The diagnosis was remarkably accurate. At 27, his kidneys began to falter considerably, and at 29 he was told he needed dialysis.

He had the choice of peritoneal dialysis, which requires five or six 20-minute treatments each day, or hemodialysis, which is usually done in a hospital, three times a week for about four hours each visit.

He first chose peritoneal, as it better suited his busy lifestyle as a lawyer. He could do it at home and not be tied to the hospital's schedule. Two years passed, and in October 2001, he received the phone call telling him a suitable kidney had been found. He underwent a transplant, but the results weren't perfect.

"I lived with that kidney for barely two years," he recalls. "It wasn't much of a honeymoon — more of a roller-coaster. It stopped working in October 2003. It was a very gradual rejection.

"I was getting sick," he remembers. "I was getting tired."

For his second time through dialysis, he chose hemodialysis, which he underwent at the Riverside Hospital three times a week. He had an arteriovenous fistula surgically made, temporarily grafting a section of artery to a vein in his arm. Because of the greater blood flow, the vein eventually becomes thicker and stronger, allowing it to support the needles through which nearly half a litre of blood will run each minute. "It's as if you had your kidney outside your body," he explains.

After nine months he was asked if he wanted to try a home dialysis unit, which he could do at night while he slept.

"I knew it was the next best thing to a transplant," he says. "When you do home hemo, you can do it more than three times a week."

For four years he did home nocturnal dialysis five nights a week, eight hours a night — more than three times as much as he'd receive at a hospital. His kidney function began to approach normal, and so other adverse side-effects, such as variable blood pressure, were lessened.

(His water bill, however, ballooned. Nocturnal dialysis requires 2,000 litres of water per night — "It's like I was filling little swimming pools every week," he says — and his bill went up five-fold. He lobbied the City of Ottawa for relief and, as a result, residents undergoing home hemodialysis can now claim a $500 tax credit. The precedent has since been adopted by other municipalities, and the Ontario Renal Network, a committee established by the Ontario Ministry of Health, is currently studying the issue.)

"I had to do an hour to an hour-and-a-half every night to prepare the machine, five nights a week," he recalls. "It's not fun. Or you're relying on the hospital to do the dialysis.

"You can't travel easily. You can't go away for a week without dialysis.

"You need your three treatments a week. I could go away to Montreal for a long weekend — two nights at the most. That's it."

When he did travel — mostly to Quebec City, where he's from, to visit family — he tried to arrange for dialysis. But he also went to France twice and Hawaii and New Jersey, once each. He would find facilities over the Internet and book appointments. OHIP would reimburse him $250 per treatment.

The call for his second kidney transplant came in June 2008.

"I had to get my things pretty quickly," he remembers. "They phoned at midnight and said, 'Mr. Dussault, we have a kidney for you,' and I started crying and shaking. I took a shower and in 45 minutes I was at the General.

"I was nervous. After 4 1/2 years of waiting, the emotions were all over me. I thought about the person who had just passed away. When I was in the shower I was first thinking about me, and stupid things, like this is going to be my last shower for a week, and looking at my tummy because I knew exactly where they were going to put the transplant . . . crazy things.

"Getting a transplant is an unusual surgery," he adds. "You get someone else's part, someone who just died. You cannot say you didn't think about the donor. I was also worried that it wouldn't work, because I had a failed transplant the first time. I was very worried about that.

"So it's a mix of everything."

Additionally, he wasn't yet sure he'd get a kidney. With two of the organs available, three candidates are typically called in. Further tests are done, and the two most suitable patients get kidneys. The third returns home disappointed.

On the morning of June 5, he was told he'd been chosen to receive a kidney. The transplant got under way at 8 a.m.

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Three-and-a-half years later, Francois-Rene no longer relies on a machine to keep him alive. He's visited Spain, Turkey, Morocco and Germany, and is planning to visit the Pacific Rim this winter.

He regularly volunteers with the peer support program, helping others understand dialysis and transplant issues, and sits on the board of the Ottawa chapter of the Kidney Foundation. He's a member of the steering committee of Champlain Local Health Integration Network, representing both Renal Network and Kidney Foundation. He also sits on another committee that deals with independent dialysis.

He works more than full time, and stays in shape by going to the gym.

"I was on life support — dialysis is life support — for most of my 30s," he says. "I'm doing this now because I value what life is."

He knows, too, that he may find himself where he was eight years ago: on dialysis and waiting for another transplant. A kidney from a cadaveric transplant has a life expectancy of 10 to 15 years. One from a living donor, maybe five years longer.

As well, with each transplant a recipient gets, he develops antibodies that make subsequent matches more difficult.

"I know my transplant won't necessarily last all my life, so I'm trying to live in the present time with this kidney — travel a lot and enjoy life — and we'll see later on."

HOW TO REGISTER TO BE A DONOR

One donor can save eight lives and improve 75 more.

Anyone 16 and over can register.

Even if you've signed a donor card, it doesn't mean you're registered.

Go to beadonor.ca to sign up.

Also, it's important to tell your family your wishes.

For more information, visit giftoflife.on.ca.



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