As wait for kidney transplant gets longer, these patients say their hurdles are mounting
'We thought we would be in our healing process by now'
Chris and Carolann Harris refer to a cluster of bright and cheery posters in their kitchen as their "positivity wall."
It's an attempt to veil the financial and emotional stress they've been under while waiting months for a promised kidney transplant.
They were both supposed to have surgery in December — Carolann is a match for her husband.
But the couple, along with other transplant patients, told CBC News that because of an unfilled co-ordinator position, the transplant has been delayed, leading them into further financial troubles.
"We know that the end result is going to be he will receive my kidney. It's just getting to that point," said Carolann, wiping away tears with the back of her hand.
"We thought we would be in our healing process by now and the kids would have their dad back and our lives would be relatively normal. But it's not, and that's hard."
He remembers, on Feb. 18, 2014, standing over the toilet at 2 a.m. and coughing up blood, thinking he needed to see a doctor. He had noticed blood in his urine for the previous few weeks, but said he was too stubborn to make an appointment.
He was diagnosed with Goodpasture Syndrome and currently undergoes three dialysis treatments a week.
Lack of up-front financial support
The couple says they're desperate to get the surgery done so Chris can go back to a normal life — and to finally put an end to their overwhelming financial struggle.
People in need of an organ transplant have to leave the province to get it. The Newfoundland and Labrador government funds the stay and travel expenses. But based on the program, patients are reimbursed for their expenses, not given a loan beforehand.
"How do you pay for it up front?" said Carolann.
She says her husband is not able to work and is currently fighting for disability. They're trying to support a family of four on one salary, all while trying to save up thousands for what could be a two-month stay in Halifax.
"We are trying our best, we are working ... Tell me how it's okay that if we don't have the money in the bank to go to Halifax, that we will continue to have to wait until we do," she said.
The couple has been relying on friends, family and their community for financial support. They've started a GoFundMe page and have held several fundraisers.
"We should never have this burden with everything else going on."
The couple said they are hoping to get the transplant before the beginning of May.
Lack of co-ordinator affecting other cases
Last week, CBC Investigates spoke to a transplant patient about his struggle with the lack of a transplant co-ordinator.
Minister of Health and Community Services John Haggie said he wasn't aware of any other incidents in the province.
However, like the Harrises, Murray Sheppard and his sister have also had their transplant put on hold, waiting for someone to permanently fill the co-ordinator role.
Sheppard's sister is his kidney donor. He lives in Lark Harbour and she lives in St. John's, and goes to her appointments in the city.
Sheppard said he was supposed to get the transplant early last summer and is still waiting. The longer he waits, the worse his condition gets — he said he's developed a number of other medical complications and said both of his feet have lost all their feeling because of diabetes.
"If I could have had my kidney earlier, a lot of stuff could have been prevented. Things change pretty quick, your life is pretty well gone, you're living to do dialysis and just trying to cope from day to day," he said.
"It's hard stuff."
'Come and contact us,' says health minister
With respect to the Harris's struggles with paying the up-front costs, Haggie said if someone qualifies for income support, the government will pay for their services as they are needed. Everyone else has access to a reimbursement program, he said.
"We found the program, though it's not perfect … It has not generated any concerns that I have been made aware with regards to the transplant patients."
Haggie said he regularly meets with with the Kidney Foundation to discuss ways to better help those with kidney issues and is willing to look at these situations on a case by case basis.
"If anyone feels they are in a financially difficult situation, come and contact us," he said.