An ill Windsor, Ont., woman claims she was taken off of the kidney transplant list without her or her doctor's knowledge, and only found out after her family was discussing whether she would be the one to receive her late brother's donated kidney.
Beverly High said she thought she had been on the wait list for a kidney for two years. But in December, she said, she was told that she had never been on it. If High were on the transplant list at that time, she still might not have been targeted for receiving her brother's kidney, because an organ donor cannot choose who will receive donated organs.
High, 61, said she has since found out she was on the wait list, but had been taken off in August — and was never told.
"I talked to the doctor and he said that he wasn't even aware that I was taken off the transplant list. That another doctor had done it," said High. "It's been real upsetting. I cried a lot, I screamed a lot, but there's not much I can do about it. I just have to grin and bear it."
CBC News has attempted to speak to the medical teams who would be responsible for ensuring that High be placed on the list, but those requests were denied.
However, the physician who helped design the province's kidney transplant system said he can see how something like this could happen. He was not involved in High's case.
How it could happen
"I'm not here to point fingers at any program because I think in all programs … we hear that communication is the biggest issue that they would like to be better," said Dr. Jeffrey Zaltzman, director of the kidney transplant program at St. Michael's Hospital and the chief medical officer of transplant for Trillium Gift of Life Network.
"Communication is probably one of the biggest areas of angst between the transplant programs and referring centres and for the patients as well."
Although it is possible for a patient to be removed from the kidney transplant list in Ontario if they become medically unfit to receive an organ, that person is supposed to be notified in writing by a mailed letter.
"The transplant program should make people aware when they're on the wait list and if they're put on hold by written communication," said Zaltzman. "Does it happen across the board? I don't think anyone's able to audit that but the programs are supposed to be doing that."
Trillium co-ordinates organ and tissue donation and transplantation in the province and the wait list, said Zaltzman. But there are regional centres and programs which are responsible for assessing patients to find out if they are eligible for transplant.
For High, her doctor at Windsor Regional Hospital would co-ordinate with the London Health Sciences Centre to get her on the wait list.
"It's very frustrating because one person will tell you one thing and another person will tell you something else. And then it just goes down the line like that and you never know what's the truth and what's not the truth," said High.
As a teenager, High was diagnosed with Type 1 diabetes. She said her health started to worsen about two years ago when doctors told her she should start dialysis treatment for her failing kidneys.
She thought she had been properly assessed at that time when she was originally going on the list. Now, she said. she's been told she'll have to go through those tests again.
"The communication was dropped somewhere along the way and it should never have been dropped like that."