The Burden of the Wait: Living with kidney disease, clinging to hope for a second transplant and a lavish gift

When June and Russ Jones are together, they smile easily and often laugh.

“June and I have been together for over forty years,” Russ said.

“We hit it off from the start,” June smiled.

The happily married couple are grateful for the life they have created and their countless blessings.

“I have an amazing husband; I have two amazing kids who married two amazing people from amazing families. I have four beautiful grandchildren. Life is good,” said the 61-year-old wife, mother and grandmother.

“Life is really good.”

However, this life was not without heartache. June lives with kidney disease.

“She’s had that for most of her life, but also for most of our marriage,” Russ said.

And June needs a transplant.

“Well, I’ve been waiting for a kidney for nine years now,” June said, the smile gone from her face now.

“Hopefully one day. But, you know what? You lose hope when you’ve waited so long. It’s tough,” she said, her eyes filling with emotion.

After the birth of her second child in 1989, June felt unusually run down. A doctor diagnosed her with IgA nephropathy, a disease caused by her body’s immune system attacking her kidneys.

“And that was the beginning of my kidney disease. I had to watch my diet, I took medication for high blood pressure, but I did pretty well for the next 10 years,” June said.

“We were even planning to move to the US until I spoke to my specialist,” June said.

“She said, ‘No, that’s not going to happen.’ And I said, ‘What do you mean?’ She said, ‘You’re going to have dialysis.’

“It was a total shock to me. We had never talked about dialysis before.”

When June’s kidneys finally stopped working, her doctor’s predictions came true.

“Within two years I was on dialysis,” she said.

However, within six months of starting dialysis, June received life-changing news. A matching donor had been found. June would receive a kidney from a deceased donor.

She remembers coming home from her son’s hockey practice and being greeted by her daughter.

“I opened the garage door and my daughter was there. She said, “Mom, did you hear the news? They have a kidney waiting for you.’”

“It was unbelievable that it came so quickly. It was a miracle,” June said.

“On the way to the hospital, I said to my husband, ‘Our lives are about to change again.'”

And indeed, her life changed.

The transplant marked the end of dialysis and the beginning of freedom for June and Russ. Long sessions on a dialysis machine were over. Travel and spontaneous excursions were possible again.

“During that time, it was quite an uplifting experience for both of us. We actually moved to California for three years,” Russ said.

“Life was great. We could travel anywhere. Oh, it was amazing,” June said.

But in 2013, June became increasingly unwell. Her transplant failed.

“We came back from the States in 2010 and in 2013 I lost my kidney.

“I got really sick and one day I got a call from one of the nurses at the transplant clinic. She asked us to come in.

“She told me I was going to lose my kidney. I asked how long I had and she told me six weeks max,” June recalled.

“I think I had a month and it was over. That was devastating. Destructive.”

“Her original transplant took almost 15 years,” said husband Russ.

Every other day, for several consecutive hours, June has hemodialysis at home – a machine that cleans her blood while she rests or sleeps. It can be uncomfortable, limiting, and sometimes painful. She had a severe headache while using it.

Ottawa Hospital doctors were “amazing” in helping June with dialysis.

“I don’t know what I would have done without her,” June said.

Dialysis isn’t a permanent solution, but until June gets a transplant, it’s her only option.

“This is my life. I can’t do anything spontaneously because I have to be home for dialysis. It definitely makes life more challenging, but I’m still alive and today is a good day,” she said.

Russ helps June set up the dialysis machine every time, offering her unwavering love and support.

“I give her full credit for having a lot of grit,” he said.

“He is absolutely fantastic. Oh my god — he’s my savior for sure,” June said.

June is on a Canada-wide waiting list for a kidney donor and on a so-called “highly sensitive” list, but finding a match is difficult.

“I had two pregnancies, five blood transfusions and one transplant. That puts more antibodies into my system and they’re fighting other organs, so I’m very hard to beat,” June said.

“I’ve actually had fifteen people come forward to give me a kidney. There hasn’t been a match yet. So now I’ve been waiting for nine years. Hopefully one day, but you lose hope when you’ve waited so long,” June said.

June’s immediate family members are mismatched. Neither did any of her eight siblings.

“Their siblings have a different blood type, and while some of them wanted to donate, they couldn’t,” Russ said.

“It could happen tomorrow; it could never happen.

“It’s not the best life to have, but we try to enjoy it as much as we can.”

Russ was Shopify’s first Chief Financial Officer prior to his retirement. He is also a board member of the Ottawa Hospital Foundation. The Jones family recently made a $10 million donation to help build the new hospital.

“Everyone is touched by a hospital at some point in their lives,” he said.

Half of the Jones family’s transformative gift will support kidney research and the ongoing mission to find a cure.

“To make advances in terms of kidney disease, but also on the clinical side, to improve the lives of dialysis patients,” Russ said.

“And we’re hoping that this evolves into something where you don’t have to wait for someone to die to get an organ. Maybe there is a way to do this artificially, or a way to do it through some other mechanism. We have some incredible research talent and it’s very rewarding to see some of their progress.”

“This is a unique opportunity for people to support Ottawa Hospital,” he said.

For now, June Jones continues her wait.

“It’s tough.”

The middle child of nine from a close-knit Ottawa Valley farming family is trying to stay strong for her loving husband, children and grandchildren.

“I am a fighter.”

And now June fights with this family for the ultimate prize.

“My biggest hope today is to get a transplant,” she said.

“It’s an amazing miracle when you get that kidney when you get that call.”

The Campaign to Create Tomorrow in support of Ottawa Hospital has now raised $233 million of its $500 million goal. Visit ohfoundation.ca for more information