LOGAN LAKE - Family and friends are not happy with Kent MacInnes’ decision to stop pursuing a much-needed organ transplant — a surgery which would buy them more time with him.
But the Logan Lake man considered the toll and the cost of recovering from the surgery — no less than $50,000 — and can’t bring himself to do it.
"I don’t want it to be a case of driving my family into bankruptcy to get a few more years,” he says. "It would require packing up everything we’ve got, selling off everything we’ve got — basically going broke to have on average of another five years.”
The 60-year-old was in the process of adding his name to a wait list for a heart and lungs transplant — an all-at-once miracle surgery which only happens in Canada twice a year. But the real miracle would be finding the cash to pay for aftercare. He doesn’t know exactly what that figure is, but the $2,000 per month to rent in Edmonton’s University district was enough to stop him from looking further.
He reached out to Infonews.ca after reading about Tammy Valin, another Logan Laker, who needs an organ transplant and is just starting to add up her own costs to an estimated $20,000. There’s no cost for the transplant, of course, but no one gets a transplant if they can’t prove they have the post-surgery care. B.C. Transplant encourages people to seek financial support for their aftercare plans, either through non-profits or fundraising in the community, but MacInnes says it’s not for him.
“There’s places to go and look to for help but it’s an awful thing to go hat-in-hand for,” he says. "It’s not just a pride thing. For some people it’s difficult to ask for help, but it’s also that idea that for a lot of us getting to this stage has been an awful fight. You get worn out of this fight and the idea of fighting for more while running around asking everyone else to join the fight can be pretty tough. I’ve thought about it. I don’t want to wrap up feeling all that frustration.”
MacInnes has congestive heart failure. He also has idiopathic pulmonary fibrosis and he was told most people only live for two years after diagnosis. For him, that was seven years ago. Just breathing is difficult. It restricts his movement and he depends on bottled oxygen.
"Trying to breathe sometimes gets really scary,” he says. "I don’t think that people really understand how frightening it can be to not be able to take a breath. When you fill your lungs and it’s not enough, that’s the part that bothers me. I can’t do much anymore. All the fun stuff is pretty much done."
He doesn’t know how much time the transplants would buy him, but when he found out there was no timeline to get to the operation, he gave the idea a second thought.
MacInnes says the medical staff, the medical system is great but the cost, the wait, the fatigue — it’s all too much for a man just struggling for his next breath.
"It does make it challenging and may be even impossible for some of us to be able to afford it. It is a rich man’s world and things like that just continue to make it that way,” he says.
He feels for Tammy Valin and others confronting the reality of facing death because of a lack of money.
"I really know where Tammy’s sitting right now on the financial aspect and I really hope it goes well for her,” MacInnes says. "I want to go out not worrying or waiting if I get a call today."
To contact the reporter for this story, email Glynn Brothen at firstname.lastname@example.org or call 250-319-7494. To contact the editor, email email@example.com or call 250-718-2724.
— This story was corrected at 11:00 a.m., Oct. 9, 2015 to clarify Kent MacInnes was in the process of applying to be on the waitlist for an organ transplant when he decided to no longer pursue the surgery.