Waiting Their Turn

by Myra Ross,
Thursday, July 23 2015

Kelly, Grace and Derek Williams

Theirs seems like the perfect life.

Derek Williams works on site for Syncrude, his wife, Kelly, works for the Regional Municipality and their 10-year-old daughter, Grace, attends a Catholic school in Timberlea. Their house is magnificent and visitors automatically head toward the large kitchen, a welcoming place. There is a car, a truck and a racy, new motorcycle in the driveway, a trampoline in the back yard and Kelly’s parents live close by in the basement suite. They will be travelling to Newfoundland for a 12-day holiday in July.

Derek, 43, recently rode the 1290 KTM Super Adventure motorcycle to Edmonton for servicing, all the while mentally gearing up for his own maintenance at the Northern Alberta Renal Program's Home Hemodialysis Unit, located adjacent to the Cross Cancer Institute near the University of Alberta Hospital. His quarterly visits confine him to a dialysis machine for four hours, and then there are consultations with his team of specialists, nephrologists and nurses.

The program offers patients with failing kidneys complete renal care, including hemodialysis, which can be done by individuals in their homes. The procedure requires two machines: the water-purification machine ensures that only pristine water is used for hemodialysis, while the hemodialysis machine itself acts as an artificial kidney, removing fluid and waste products from the blood and also correcting electrolyte imbalances.

Since May 2014, Derek and Kelly have transformed their bedroom into their home-based hemodialysis unit, the lifeline that keeps him alive and relatively healthy. Every second night, Derek connects to the hemodialysis machine, which then processes 120 litres of his blood. When he wakes up, he undertakes his daily routine with his family, work and recreational schedule.

End Someone’s Wait:
Become an Organ Donor

While 90 per cent of Canadians support organ and tissue donation, less than 25 per cent have made plans to donate, according to the Canadian Transplant Society. With more than 1,600 Canadians added to organ wait lists annually, too many people die while waiting for an organ donation.

There are two kinds of organ donation. The first is a Living Donation, the second, a Deceased Donation.

Donating a kidney is the most frequent type of living organ donation and it is the most successful of all transplant procedures. Normally, everyone has two kidneys, although a person can live a healthy life with one.

Living donation occurs when a person freely decides to donate one of their kidneys to someone in need of a transplant. This compassionate gesture offers the individual waiting for a transplant an alternative to dialysis or a deceased donor transplant.

There are better donor organ survival rates with a living kidney transplant. The kidney often lasts longer, which is partly due to more time being available to get a better tissue match between donor and recipient and higher compatibility. The kidney from a living donor is usually healthier and a kidney from a living donor usually works right away, and a kidney from a deceased donor may take days or weeks to start to work normally.

Albertans can now sign up to be an organ and/or tissue donor on MyHealth.Alberta.ca. Share with family and loved ones that you have signed up to be a Deceased Donor. They will then be prepared to speak on your behalf.

There is a Living Donor Service in Edmonton, which arranges all testing and consultations for the potential living donor. To be eligible, the prospective donor must be an adult of 18 years or older who does not have any disease. To learn more, read these frequently asked questions about the service.

Facts above were provided by the Kidney Foundation of Canada, the Canadian Transplant Society and MyHealth.Alberta.ca.

“The beauty of the home dialysis is that it has no impact on my life,” he says. “I get on the machine, I go to sleep, I get up and away I go."

“But if something fell through and I had to go to the hospital here, there’s only dialysis available on Monday, Wednesday and Friday during regular business hours, which would be a major impact on my job, my home and my family,” he explains.

“Because the dialysis unit in Fort McMurray operates on a part-time schedule, any emergent medical support that I require outside of their working hours requires travelling to the University of Alberta Hospital in Edmonton. If anything like that happens to me on a Friday night, it’s down to the University of Alberta. And if home dialysis wasn’t an option for me, our lives would be different.”

Derek’s health challenge began when he went for unrelated tests 15 years ago and learned he has polycystic kidney disease and that his renal function was deteriorating. The kidneys regulate blood pressure, produce red blood cells, filter waste and contribute in many ways to keeping the body functioning overall.

“I never showed any symptoms,” he explains. “Once diagnosed with polycystic kidney disease, my doctor put me on blood pressure pills as a preventive measure to maintain a healthy blood pressure. Since my diagnosis, every year, my renal function went down. I faced end stage renal failure in May 2014. I have no renal function now, so I dialyze every other night. I rely on the hemodialysis machine to do the job of my kidneys … to remove toxins and clean my blood. It’s quite a bit of work and Kelly has taken on a good portion of that. She’s awesome.”

The day Derek began dialysis was the day his name went on the waiting list for a kidney transplant.

“I’ve been on the list for a year and a month,” he continues. “I have Type O blood and can only receive a kidney from a person with Type O blood. A kidney from a family member or a living donor is the ideal situation. These two scenarios provide the best success rate for those receiving donated kidneys.”

But Derek conveys a sense of calm about being on the transplant list. And he has faced questions about the future that simply cannot be answered.

“Me, personally, I’m doing okay on dialysis,” he says. “There are no real complications. I had a friend whose kidneys failed and he got really sick. I never, ever got sick. My only symptom was sore, stiff, hurting legs, so much so I couldn’t sleep at night."

“I did ask myself if I would be there to see Grace graduate. Will I be there to see her get married?"

“But," says Derek, "I am still young, at 43, and there are many others with chronic kidney malfunction that I see when I go to a dialysis unit at the hospitals. I see those who are far more acutely sick than I am. If I knew that somebody somewhere else in Alberta, whose condition was worse than mine, desperately needed a kidney now rather than later, I would have to say I’d wait my turn. I’m willing to wait my turn.”

“Eventually, my name will come up.”

Kelly clarifies: “Derek is an anomaly,” she says. “Throughout his decline in renal function he didn’t really have any significant symptoms. His friend, who also experienced renal failure, was extremely sick with a creatinine level of 600." (When there is kidney damage or disease and the kidneys are not able to filter waste efficiently, there will likely be a rise in creatinine levels in the blood).

Derek and Grace

“Derek, on the other hand, didn’t have any symptoms until his creatinine level reached 1,200,” she says. “At that point, his only symptom was pain and stiffness in his legs. He also has dietary restrictions. Salt and potassium must be kept to a minimum. Too much potassium is fatal because it stops the heart. So, just because he has a dialysis machine at home doesn’t mean he can eat whatever he wants."

“He’s doing very well, physically, compared to many with the same condition, but he didn’t look this good last May with his total renal failure. It would mean a lot if he received a kidney within the next five years while he is still relatively young and free of additional health issues.”

When Derek receives a kidney transplant, he will no longer need the central line in his chest that he requires for the hemodialysis. And their bedroom will no longer serve as a home-based hemodialysis unit.

After his kidney transplant, Derek can once again put on his bathing suit and take to the waves, and his dream is to travel to Europe.

Currently, Derek’s ability to travel is very restricted. In order to travel, the Williams family has to arrange dialysis at a hospital in their destination. That's expensive when travelling outside Canada. When the family travels to Newfoundland in July, arrangements have been made for Derek to make regular visits to a local hospital to receive dialysis.

As the Williams family continues their journey together, they look forward to the day when Derek can take Grace swimming and when he can have the very best possible prognosis for the future.

There are many more photos to be added to the family portrait wall, including Derek and Kelly attending Grace’s high school and possibly her university graduation and veterinary college.

And, of course, her wedding day.

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