2018-03-14

Blood brothers

by Gayle Wilson

  • <p>GAYLE WILSON PHOTO</p><p>Happier times. The Edwards are excited about a future with a new kidney for Rob.</p>
  • <p>GAYLE WILSON PHOTO</p><p>Rob and Sarah Edwards of Lunenburg were waiting more than four years for a donated kidney for Rob before Geoff Kennedy of Halifax offer him one of his.</p>
  • <p>CONTRIBUTED PHOTO</p><p>The donor, Geoff Kennedy, who was inspired to offer one of his kidneys in light of his father&#8217;s complete recovery from a double lung transplant.</p>

After months of holding back, not daring to let hope enter their lives, Lunenburg's Rob and Sarah Edwards are finally and fully excited.

They're looking forward to March 19 as a transformative date of a magnitude that most of us can only imagine.

That's the day Rob expects to be on a Halifax hospital operating table, receiving a new kidney, and essentially a new life.

He's spent four years on the donor waiting list, and he's only getting one now because a live donor has come forward.

The Lunenburg couple's compelling story is a shout-out to the increasing toll kidney disease is placing on individuals and their families, to the power of good intentions, and to the call for optimizing Nova Scotia's organ donations.

In a nutshell, Rob will be lying on that hospital bed thanks to an inspired stranger who learned about his situation through an outpouring on social media.

Before he begins his surgery around noon, Geoff Kennedy of Halifax will be at the same hospital having one of his kidneys removed for transplanting into Rob.

The uncanny resemblance between them is not lost on either of them. They're both 38 with birthdays not far apart, both are tall and greying slightly.

They have become fast friends, and appreciate the poignancy of their undertakings.

"I'm getting a kidney and a buddy," Rob told LighthouseNOW. He smiles with a satisfactory grin over the simplification, while Sarah adds that their boys are getting their dad back.

"Our three-year-old has never known me not sick. It's going to be a whole new world," explains Rob.

Kennedy has been there. His father has a genetic disposition that led to a double lung transplant about three years ago. His dad is now alive and well, and the only way you would know he has two new lungs is if you ask to see his surgery scar, according to Kennedy.

"It was pretty eye-opening how genetic lotteries can sometimes really kick you in the shins," he says. "I know the effects or organ donation and how important it is. And my politics have always been aligned with being an organ donor and checking that box."

Rob suffers from a rare genetic kidney condition that he struggles to pronounce; Sarah reports it's limited to 14 families in all of North America. Rob's grandmother died from it, his mother and two uncles have had kidney transplants because of it, and his sister carries the disruptive gene.

He was diagnosed with the condition eight years ago; the last few years his health has deteriorated substantially.

He started peritoneal dialysis in September, 2016, paid for by the Kidney Foundation of Canada.

The process involves feeding two litres of fluid into his peritoneal cavity through a catheter and flushing out toxins. He began with four treatments a day, but he's now at six.

The implanted catheter tube and the fluid are putting pressure on his sciatic nerve.

He has aching muscles, while "dirty blood" results in the build up of minerals and calcification at a cellular level.

Rubbing his hands, he says, "It feels sometimes like I have little bits of glass everywhere."

Formerly an employee with the Nova Scotia Liquor Commission, Rob hasn't worked for two years. Earlier this month, Sarah closed down her at-home day care centre to help care for him.

They're quick to recognize the financial support from friends who have orchestrated various fundraising activities.

Slow to receive a kidney through the official organ waiting list, and having had no luck establishing suitable matches among relatives, on May 11 of last year the soft-spoken Rob put out a subdued plea on Facebook.

"I'm not one to ask for help, but I guess there comes a point. I need a kidney. I am A blood type. It you think you might be able to help, please talk to your doctor."

Within minutes the messages of moral support came pouring in. The post was shared more than 250 times - and ultimately landed on Kennedy's Facebook stream.

Knowing his own blood type as A-positive, Kennedy says he had an "unstoppable curiosity" as to whether his type might be compatible with someone with type A blood.

The Canadian Blood Services couldn't enlighten him, and instead referred him to the live kidney donor coordinator at Nova Scotia Health, Heather Travis, who confirmed it is possible.

He realized the potential opportunity it presented, telling himself, "You can really do something, something truly great and truly life-changing for somebody."

However, it would be a long road of compatibility testing.

"'We're climbing a mountain here. And that's all we can do, is just take one step at a time,'" Rob recalls Kennedy telling him.

While each step brought positive results, Rob and Sarah wouldn't let themselves get excited.

Meanwhile, Kennedy had been fully versed by medical professionals about the surgery procedure, potential complications, and its ultimate consequences for himself.

He's been advised that, typically, the donor's remaining kidney tends to grow and compensate for the missing one, and tests confirmed he's physically sound to go this route.

Once the seemingly endless series of tests were finished and Kennedy had been given the final thumbs up on compatibility, Sarah got excited. For Rob, it would take the medical system to provide them with a surgery date.

He got the call mid-February.

"I said, 'Well the day's kind of busy but I can probably move some things around,'" Rob recalls with a grin.

Kennedy is concerned it has taken a a live donor to solve Rob's situation, and he says most people in Canada don't realize how "precarious" the supply of donated organs are.

"I've just been kind of surrounded by the impact of what donation can be. And I was reading [Rob's] story and thinking, 'Well, somebody's got to do something.'"

He advocates a subtle change to the wording for organ donations on Nova Scotia's health plan application and renewal forms so that people are not asked to opt into donating their organs, but rather opt out.

"We seem to be withholding our organs as though we're being asked to give them away. I think we have that thought re- framed, and we go, 'Do you want to keep your organs? Because we really need them,'" says Kennedy.

The long and short of it

In a 2016 report, the Kidney Foundation of Canada reported that 41,931 Canadians were being treated for kidney failure, a number that had tripled in the previous two decades.

Noting kidney disease is the 10th leading cause of death in Canada, the foundation cited diabetes and renal vascular disease, including high blood pressure as the two leading causes.

Of those undergoing treatment, more than half - 57.5 per cent - were on dialysis, while 42.7 per cent of patients had a functioning transplant.

Nearly 75 per cent of the more than 4,400 Canadians on the waiting list for an organ transplant were waiting for a kidney.

On average, kidney patients wait four years or more for a deceased donor kidney transplant

The five-year survival rate for adults with transplanted kidnesy is nearly 90 per cent from living donors and 83 per cent from deceased donors.

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