Driving through the roadblocks
For Debbie and Ted Worley, spending time with extended family is the ultimate retirement dream. With family members scattered throughout North America, from Grimsby to California, the journey to each home has the potential to become an adventure in itself.
But before the Worleys could hit the highway – an act that most of us take for granted — they first had to overcome an incredible roadblock.
Debbie has polycystic kidney disease, a condition that she lived with unassisted for almost 30 years until her kidney function suddenly reduced to “next to nil” only a few years before Ted joined her in retirement.
“When a patient’s kidney function falls below 20 per cent dialysis can assist with the blood purifying functions that kidneys would normally provide,” says Barb Dalrymple, coordinator of the hemodialysis unit at LHSC’s Kidney Care Centre in Westmount Shopping Centre.
Typically, dialysis patients spend four hours, three times a week in a clinic undergoing dialysis treatment. The time commitment is equivalent to a part-time job.
For Debbie to undergo treatment while traveling, it meant sacrificing time away from family. In the instances that she did undergo dialysis while traveling through the United States, she found herself squeezed into appointments at odd times – and after the treatment, too exhausted to do anything but sleep.
Through the regional renal program at LHSC, travelling patients can have dialysis treatments coordinated around the world, but in order to obtain complete independence while away, the Worleys stretched their ingenuity one step further.
With the help of the regional renal program, Debbie and Ted took their home — and their home dialysis — on the road.
This past June, technicians from the biomedical division of LHSC installed a dialysis machine in the couple’s 40-foot motorhome.
The tall white machine with tubes, filters, saline pouches and containers of solution appears starkly medical in contrast with the warmth of the coach’s leather furniture, but the dialysis machine is a welcome and comforting addition.
“Having it installed was one of the best decisions I could have made for myself,” says Debbie.
“The couch was becoming her best friend,” says Ted.
“Look who’s talking,” she retorts with a smile as a playful tension dances between them.
It’s clear by watching them interact, that Debbie and Ted share the special bond that exists between two people who have been through it all together.
Ted moves about the machine with ease, explaining the various functions and processes with in-depth knowledge that could pass him as an expert. It is the second dialysis machine that the Worleys have; the other has been installed in their permanent residence. Debbie is now completely free to conduct dialysis away from a clinic.
The couple is just two of almost 200 people in the London region that the regional renal program has trained to conduct their own home dialysis through the home hemodialysis and peritoneal dialysis clinics. For motivated patients, home dialysis allows individuals to tailor their treatments around their lifestyle, providing them with freedom and flexibility.
After receiving six weeks of intensive training that covered everything from using needles, hooking up access lines, setting parameters on the machine, and cleaning and maintaining the equipment, the Worleys were sent home to put their learning to practice.
“At first it was scary,” says Debbie, as she and Ted recount a few mistakes they made with wry smiles.
“The first thing they say is not to panic,” says Ted.
“So that’s the first thing we did,” adds Debbie with a laugh. “But the Kidney Centre has a helpline and there’s always someone there 24/7 to help you out.”
With their minor blunders behind them, they have now fallen into a routine of shorter, more frequent treatments. Each morning, seven days a week, Debbie spends two hours undergoing dialysis. The frequency has made a difference that she can feel and Ted can see.
“You have more energy now,” says Ted as Debbie nods and mentions her love of running in the morning hours, when the air is cool and crisp.
Now, wherever the Worleys may travel, staff at the regional renal program ensures that the water quality at their chosen campsite is up to standard for use with the dialysis machine. They also help ensure that Debbie has an adequate supply of medications and that she can access a test centre for her monthly blood tests. A 24/7 phone line is available in case they need to troubleshoot issues with the dialysis machine.
This winter they will embark on their longest journey yet – a four-month trek to California where one of their daughters is hosting her wedding.
It is just one of the many trips that the Worleys hope to make as they wind their way across North America to visit family and see the places that they’ve never been, untethered from issues of access to dialysis and limited only by the network of roadways that crisscross the continent.