Polycystic Kidney disease has run in Randall Russell’s family for more than a century. His great-grandfather had it, his grandmother had it, his father had it, he has it and his son has it. Anyone that inherits the gene is born with tiny cysts on their kidneys which grow over time, eventually killing the kidneys’ ability to function.

As the fluid-filled cysts on the kidneys grow, they block out the filtration capacity of the nephrons. “The little filters,” Russell calls them.

One of the primary functions of the kidneys is filtering toxicity from the blood. When that function breaks down, the blood is slowly poisoned. This can lead to extreme itching, lethargy, sickness and other complications. It would take years before the disease progressed to the point of Russell needing a transplant, but at the end he was so lethargic and tired he couldn’t do anything. “Francine,” his wife, “did everything.”

Russell is intimately familiar with the disease. Long before his diagnosis he heard stories of the suffering of people in his family. Those stories are one part family trauma and one part history of the technological advancement of medical science.

For his great-grandfather, which Russell did not know, there was no cure or remedy. His great-grandfather suffered through the disease until he died of renal failure. His grandmother was treated with blood-letting, essentially draining a certain amount of blood in order to force the body to manufacture new blood.

Blood letting is a remedy that goes back to the Middle Ages and is shrouded in pseudoscience that was common during the period. While the treatment did help with kidney disease, real improvements in the well being of patients wouldn’t come about until the first hemodialysis machines were invented.

Russell’s father underwent dialysis at the Pontiac hospital for years. Dialysis is a procedure in which a machine filters the blood over a four hour period doing the job the kidneys usually do. Three to four times a week, his father visited the hospital and sat for hours while the machine cleaned his blood.

Dialysis could only do so much, though, and Russell saw his father suffer in agony with itching. “When you are full of toxins, you could just tear your hide off,” he said. “I remember seeing my dad itch until he was in tears.”

When undergoing dialysis there are strict dietary restrictions which his father did not always follow. This lead to complications. “One time with all the weight he put on, he looked like was going to explode how big he was. Another time, he lost so much weight that he went into cardiac arrest.”

By the time it was Russell’s turn in 2017, transplants were common place. Though the treatment is common, there is a major shortage of available organs. According to the Kidney Foundation of Canada, “The need for organs for transplantation is much greater than the available supply.  In 2019, 4419 Canadians were on a waiting list for a transplant. Of those, 77 per cent were waiting for a kidney.  Wait times can range from a few months to several years.”

It is a testament to Russell’s character, that when he needed a transplant, 20 friends and family members volunteered to go through the initial screening process, saving him from a potential years long wait.

After several level’s of screening for compatibility, he was left with two options. His nephew and amazingly, his second wife Francine whom he married in 2004.

At the time of their marriage, Russell was relatively healthy. Within eight years the disease had progressed and his kidneys went into renal failure. Against all odds, when it came time for a transplant, his new wife turned out to be a perfect match.

In an interview with THE EQUITY, Francine said, “I think that it was meant to be. I believe that out God made us a match.”

On the day of the surgery Russell told the doctors, “’All I ask is that you let me see her before I go into surgery, and then when she’s coming out after hers.’” So while she came out of the operating room and he was about to head in, the hospital’s staff rolled them out on gurneys and they met in the hallway.

“We had our transplant surgeries and I remember being excited about the surgery, but terrified about Francine’s outcome,” Russell said.

Both would recover well from the surgery.

After the first couple of weeks, when he came through the initial fog of the immunosuppressive drugs and he had a functioning kidney he thought, “Wow, I didn’t how sick I was. I had energy to burn. I hadn’t felt this well since I was 30 years of age,” he said.

By the time Russell’s son Chad was 15, he was diagnosed with Polycystic Kidney disease. Now though, rather than suffering through the long progression of the disease, there is a medication called Tolvaptan which stops the growth of the cysts. If the cysts don’t grow, the kidneys will continue to function as normal. It is quite possible his son will never have to face the same complications Russell and his father faced.

It is for this reason that events like the Kidney Walk are so important in raising money for research. Russell has been involved since 2013, but started the first walk in the Pontiac in 2019.

Over the years, the Pontiac Kidney Walk has become more popular. The inaugural event in 2019 “was a big event.” Well over a 100 people walked. The initial target was $15,000, which the Kidney foundation told Russell was overly ambitious for a first walk. They raised $23,000.

COVID has had an effect in the past two years, but even then they were able to raise $10,000 last year, and are on track to do the same this year.

Kidney walk’s are considered the Kidney Foundation’s “crown jewel” of fundraising, but there is always an urgent need for donations. For those interested, Russell recommends having your intent to donate outlined in your will so that there is no uncertainty.

The happy couple work tirelessly to promote organ donation and advocate for research and they wouldn’t have it any other way.

“Francine’s sister says we are not only linked by the heart, we are linked by the kidneys,” Russell said.

More information on the Pontiac Kidney walk can be found here:  https://kidney.akaraisin.com/ui/qcwalk2021/g/26258