Jim Patten was lying in a hospital bed in St. John’s in March, recovering from a series of surgeries to remove his right leg, which he said he lost due to complications from dialysis.
Patten was groggy, because he had just finished his latest round of dialysis, a four-hour treatment that he gets three times a week.
He said dialysis has kept him alive these past seven years while waiting for a kidney transplant. But it has also put his body through the ringer.
In 2012, Patten, who was then living in British Columbia, said he was told he was at the top of the transplant list there, and would have a new kidney within six months.
But a life change brought him back to his home province of Newfoundland and Labrador, and even though he has a kidney donor who is ready and willing, Patten said he has lost hope of ever getting the life-changing surgery.
“They failed me, they absolutely failed me. From B.C., their renal system, to the renal system in Newfoundland — it’s a disgrace,” he said.
“I didn’t even dream that everything in Newfoundland would be so different.”
Patten said he’s faced a barrage of issues, from redoing multiple tests, to trouble dealing with Eastern Health’s transplant co-ordinator.
Now, Patten, 69, said he recently received more bad news: he will soon also have to have his left leg removed.
Both Eastern Health and the Nova Scotia Health Authority (NSHA) — which administers the Atlantic Canada Multi-Organ Transplant Program, including kidney transplants — told CBC News they can’t speak to specific cases, due to privacy legislation.
But in statements, the health authorities said any donor or recipient who meets the medical criteria for safe participation in the program is considered for it.
Making the list in B.C.
Patten, who was previously diagnosed with lupus, was living on Vancouver Island, when he decided it was time to get on the transplant list.
“I was No. 1 on the list and in my age group,” he said.
His daughter, Raquel Patten, said she was tested and deemed a match.
Weeks later, she said, she received an information package from B.C. and started the process of changing her lifestyle to prepare for the kidney donation.
“He moved back to Newfoundland, and that’s where we hit a brick wall,” she said.
Redoing tests for two years
After his arrival back home, Jim Patten said he spoke with Eastern Health’s transplant co-ordinator, and the situation seemed promising.
“She said, ‘From what I can gather, you should be on the list in six months.’ And I mean, we were happy. We were really ecstatic about that,” he said.
Patten said he was told he would have to redo all of the required testing to get on the list, which he thought he could complete within that time frame.
Instead, he said, it took two years.
“I got them finished — and I still couldn’t get on the list, because the ones I [had] done before that were over a year old, so I had to redo them again, and redo them again,” Patten said.
Patten’s wife, Janet Headge, recounted what happened at a doctor’s appointment.
“He went in to see one of [the specialists] because they had told him that the letter he had from that specialist wasn’t adequate, and he had to go back and get another one,” Headge said.
“When he got in to see the specialist, who had written the letter previously, the specialist actually said to him, ‘Are they trying to push you off until they can say you’re too old?'”
‘Your time is cut short’
Patten also said he believed the transplant co-ordinator was pushing him to the side.
When he finished all of his testing, Patten said he was assessed by a nephrologist and passed a physical — but was later turned down from a spot on the transplant list.
Patten wanted a second opinion, and said he was told by the transplant co-ordinator that his file would be sent back to Halifax.
About eight months later, he called the co-ordinator to check in on the progress.
“She said, ‘Your file never left my desk,'” Patten recalled.
“And she said, ‘Besides, you [have] lupus, you wouldn’t be considered.'”
Patten said that’s basically when he lost hope.
“When they turn you down to go on the list, they’re giving you a death sentence, right there. Because you are going to die.… Your time is going to be cut short,” he said.
Patten said his whole life started to fall apart in the summer of 2017.
Over time, he said, dialysis causes hardening of the arteries, which can lead to vascular issues.
Headge said her husband had to get a hip replacement, which later became infected — and led to his recent amputation.
Patten also had a bypass, with a long scar running up his left leg.
At the time, Patten told CBC News if the bypass didn’t work, he’d have to lose that leg as well.
“Basically, dialysis has kept me alive — don’t get me wrong, I’m glad of that — but this is what dialysis is after doing to me,” he said, noting that after 15 years, it has caused a plethora of health issues.
Headge said this is why dialysis patients want transplants.
“And this is why it’s so frustrating,” she said.
“People … like him, who have someone who will donate a kidney to them, should have a more straightforward and transparent system than the one that exists now.”
Process for transplant list
In a statement, the NSHA explained that, in general terms, determining a patient’s eligibility for the kidney transplant list involves testing based on that person’s health.
“[It] can vary depending on whether more or less testing is required, based on factors such as pre-existing health conditions or age,” the health authority said.
Eastern Health works one-on-one to process applications for anyone hoping to be considered for the program.
The NSHA said, when there are fewer complicating factors, some applications can be completed and submitted in a matter of months.
“Others that may require additional followup testing may take additional time to process before the chart is completed,” the joint statement reads.
The finished chart is then sent to the NSHA and reviewed by a committee, which can take “several months.”
So far this year, Eastern Health said there have been seven kidney transplants.
Last year, the health authority had a total of 16.
‘I was totally screwed over’
Patten said he’s frustrated with the transplant system in Newfoundland and Labrador, and Nova Scotia.
He said he believes his chances of getting a new kidney are gone.
“I’m just doing this [interview], so other people won’t get screwed over like me. And I believe, in all my heart, that I was totally screwed over,” he said.
“If it only helps one person, it’d be worth it.”
His daughter told CBC News she’s “disgusted” by Newfoundland and Labrador’s health-care system.
Raquel Patten said even after her dad moved, she was ready and willing to donate a kidney to him — but she said he won’t be considered now, because he’s too sick.
“We get to watch him die, because nobody would allow [the transplant] to happen,” she said.
Headge said her husband’s story should be a cautionary ta
“If there’s anyone, any Newfoundlander in this situation in another province who’s thinking about coming home, for God sakes — don’t,” she said. In hindsight, he would have suffered through his situation in B.C. to get the surgery there.
After speaking with CBC News, Patten moved to the hospital in Clarenville for his recovery and rehabilitation as an amputee. About a month ago, he went home to George’s Brook-Milton.
Now he’s expecting to have surgery to amputate his left leg in about three weeks.
Headge said it has been a difficult journey.
“It’s been very hard watching him in pain and suffering,” she said. “He should never have had to suffer as much as he did.”