Cruel and usual? Waiting for transplants

Cruel and usual? Waiting for transplants

By Joel Goldenberg, The Suburban
July 11, 2007

Town of Mount Royal resident Georgette Bensimon says bureaucratic mishaps have kept her waiting nine years for a kidney, and her health has further suffered in the process.

“The waiting list is an average of three years,” she told The Suburban last Thursday. “I’m told I’m an ideal candidate, I’ve never had any blood transfusions. Everything is okay.

“But the Royal Victoria Hospital neglected to put me on the list for three years — they could have done it right away, as soon as I started dialysis,” added. “Another time I was sick, and had a lot of problems which were consequences of renal failure — I had a heart attack and [other problems]. I was hospitalized for a month, and when you’re hospitalized, they take you off the transplant list, which I understand. I understand the rules and we have to follow them.”

She also said she spoke to a friend who did receive a kidney, has the same blood type and started dialysis later than her.

“She’s older than me, she’s diabetic — which I am not — and I found it weird I wasn’t even called [for a transplant],” Bensimon explained. “I called the transplant coordinator at the Vic and asked if I was still on the list. I was told ‘of course.’ Just to check, I called Quebec Transplant, gave my blood type. They told me I’m on the list, but you have been ‘inactive’ for 14 months. I said ‘excuse me?’ They said ‘we just get orders from the coordinator, and if we don’t get orders, we don’t put you back.’ I was furious.

“I called the coordinator, and she told me ‘you can come and check my papers.’ There’s no way I can check anything, she can tell me anything she wants. Quebec Transplant says it’s the Vic, and the Vic says it’s Quebec Transplant, and I’m in the middle. Meanwhile, I lost a year and a half where I could have had a kidney. From then on, I checked every month to see if my name was still on the list.”

But Dr. Dana Baran, medical director of Quebec Transplant and a nephrologist at the Royal Victoria, says that while the waiting time is on average two years for those with anything other than blood type O and three years for those with type O, initiatives are being taken to help the minority — less than five percent of the 750 waiting in Quebec for kidneys — who wait a longer than normal time for a transplant.

Bensimon said her blood type is O, and a donor would have to be the same blood type.

“At Quebec Transplant, we’re going over all of our allocation rules — we consult with all of the transplant centres — and I have brought to the attention of all the centres the names of patients waiting longer than average,” Baran said. “ I have asked the centres to take a look at these cases and see if there are some immunological considerations that can be reviewed and treatments that can be administered that can make someone more transplantable if that is the problem. We have tried to address the problem.

Bensimon had a second heart attack three weeks ago, which she believes is a result of the medication she takes for her kidney problems. She has since been released from the hospital.

“My body is very tired after nine years of being on dialysis. I called the Transplant Quebec coordinator and asked if they would put me back on the list as I am back home. They said ‘no, we have to wait three months, that’s the protocol. I told them I was discharged, and that if I was sick, they would have kept me. Many mistakes have been made — I’m just fed up and I don’t know where to turn.

“When I ask my doctors, they say there’s a lottery and you have to wait. It’s kind of a weird answer when it concerns your health and your life. I don’t wait for a lottery to live every day, and I don’t expect my life to be a lottery.

“Most people I know in dialysis have been transplanted, and I’m still waiting.”

Bensimon said she was then told she was a unique “particular” case, but was not told the nature of her uniqueness.

“If I was a particular case, for nine years somebody should have mentioned it. People I’ve consulted say it’s a question of HLAs (histocompatibilty antigens), what’s supposed to be matching before a transplant. I know people who didn’t even get into dialysis and were transplanted, or after being in dialysis for three months. Meanwhile, I’m nine years trying to follow the rules. I’m very compliant, I follow what doctors tell me.

“I guess I just don’t have the right connections.”

Bensimon says other places in Canada operate on a point system, with the waiting time representing points.

“In Quebec they don’t have it, and people have been fighting for it and nothing has been done.”

Baran, who is also in charge of Bensimon’s transplant file, said she could not discuss Bensimon’s case specifically because of doctor-patient confidentiality rules.

But in general, “for any period of time someone is actively waiting for a kidney, the rules of allocation are the same for everyone. In general, the blood group has to match — not necessarily identical, but it has to be compatible — and we do a cross-match when a donor comes up. If they’re incompatible, they are not considered for the organs of that particular donor.

“Our other consideration is how closely there is identity between the HLA antigens, the ‘thumbprint’ of an individual and the donor. The closer there is a match, the higher up a person’s name will come on the list.”

Baran also said Quebec Transplant is only the repository for names of those waiting for transplants — the hospital involved does a medical and psychological evaluation, and the hospital’s transplant centre decides whether an individual is suitable or unsuitable for a transplant at a point in time, depending on their medical condition.

“We wait until the centre calls us back,” Baran said.

2007-07-11 12:28:43
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