Windsor woman denied brother's kidney, finds out she's not on the transplant list

When Beverly High's brother suffered an unexpected, massive heart attack her family had a tough decision to make. They wanted to donate his organs with the intention that High, who has been in renal failure for years, would receive a kidney.

Then the Windsor woman said she was told she couldn't receive the potentially lifesaving organ, because it turns out she was not on the transplant list — even though she had thought she had been for two years.

"All I know is that I came home and cried my eyes out," High said in her Riverside home, surrounded by medical equipment. "I thought for sure I was on this list. I'm in complete kidney failure. I'm on dialysis and just waiting to get a transplant."

I thought for sure I was on this list. I'm in complete kidney failure,- Beverly High

As a teenager, High was diagnosed with Type 1 diabetes. She said her health really started to fail about two years ago when doctors told her it was time she started dialysis treatment for her failing kidneys. She said, at that time, she thought her medical team at Windsor Regional Hospital was doing the work to get her on the transplant list. 

"I asked them and they had no idea how long the list was but they said because I was going on for kidney and pancreas that I would be put higher up on the list than someone who just needed a kidney," said High. 

Recipients notified by mail

Getting on the transplant list takes many steps. High's doctor would have to first recommend for her to go through assessments, and then the London Health Sciences Centre gets involved. 

"They're seen by multiple members of the transplant team including surgeons, physicians, social workers, dietitians — it's a wide variety — and the recipient coordinator," said Dr. Anthony Jevnikar, co-director of the Multi-Organ Transplant Program at the centre. 

Jevnikar would not comment on High's case because of patient confidentiality but said the testing is complicated and additional tests might also be required. Once a patient is approved as a recipient, they are notified in writing by a mailed letter. 

Ultimately whether the patient has listed depends on their overall medical status....- Dr. Albert Kadri

Dr. Albert Kadri, High's doctor, also refused to discuss her case. But both explained there could be many reasons why a patient, generally speaking, would not be on the list. 

"Ultimately whether the patient has listed depends on their overall medical status and if someone has been unstable and has had recurrent hospital admissions, London will often not list them until they are completely medically stable," Dr. Kadri said in an email to CBC News.

Looking for answers

High said she was devastated that she couldn't receive the organ, and does not understand why she was never on the transplant list and why she was never told.

"I would have been back. Back to my normal self, my energy level would be back I could get things done around here I would be totally back to a healthy happy person," she said. "But it's not going to turn out that way."

High said she has a hard time doing basic tasks and is very weak. She uses a walker to get around and depends on nurses and aids to do a bit of housework for her. 

I said 'well put me on the list, do the work up at the hospital today that you need to get done.' They said they couldn't do that,- Beverly High

She said she wants to get more answers from her doctors but has to wait and "get some of this anger" out first. She's still dealing with the loss of her brother and accepting the whole situation.

"I was totally shocked, I said, 'What do you mean I can't get his organs — he's my brother?' They said because I'm not on the list I can't get his organs. I said, 'Well, put me on the list, do the work up at the hospital today that you need to get done.' They said they couldn't do that."