Rosalyn and Jim Butterfield are part of the Kamloops kidney community, which is why a few of us gathered at McArthur Island on Sunday afternoon.
Their son, Mike, who lives on the Lower Mainland of B.C., has polycystic kidney disease (PKD) and recently started dialysis. Yes, he needs a kidney transplant. He is on the transplant list and fingers are crossed that his time will come soon.
PKD is a mostly hereditary disease, according to the Mayo Clinic, “in which clusters of cysts develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time. . . . It’s not uncommon for people to have (PKD) for years without knowing it.”
Also from the Mayo Clinic: “Sometimes a genetic mutation occurs on its own (spontaneous), so that neither parent has a copy of the mutated gene.”
The PKD Foundation of Canada reports that PKD “is one of the most common life-threatening diseases, affecting approximately one in 400 to one in 1,000. It does not skip a generation. There is usually a family history of the disease and parents . . . have a 50 per cent chance of passing the disease on to each of their children.
PKD “is passed from one generation to the next by an affected parent. . . . Scientists have also discovered that approximately 10 to 20 percent of the PKD patient community became affected through spontaneous mutation.”
According to Rosalyn, her family falls into that latter category.
Rosalyn and Jim showed up three or four years ago for a gathering of the Kamloops Kidney Support Group. Their son had been diagnosed with KPD and hey had a whole lot of questions that we tried to answer as best we could. Since then, they have continued to join our sessions when possible.
On Sunday, then, a group of family and friends took part in a ‘Team Hike4Mike.’ We weren’t trying to raise money or anything like that. It was simply a show of support for the Butterfields, who continue to try and raise the profile of PKD,
Meanwhile, Ferris Backmeyer, 5, and her mother, Lindsey, of Kamloops arrived in Toronto late Saturday.
They are in for a busy couple of days as Ferris, who was diagnosed with kidney disease shortly after birth, is to be introduced to the staff at the Hospital for Sick Children.
Lindsey posted on Facebook that Ferris will have Monday appointments from 8 a.m. through 3:30 p.m., and then be involved in “sleep study” that night.
“She leaves that to immediately start another full day off appointments (on Tuesday),” Lindsey posted on Facebook. “Wednesday is full, too, and we go from the hospital to the airport. Home midnight Wednesday.”
You may recall that Ferris underwent a transplant in Vancouver in March 2021. However, a kidney that was transplanted one afternoon was removed that night because of developing issues with it.
The Backmeyers have held out hope since then that another kidney could be found for transplant, but that hasn’t happened. The plan now is for a different medical team to get an up-close look at Ferris with the hope that new eyes may see new opportunities.
As Lindsey wrote on Saturday after arriving in Toronto: “Ferris really enjoyed the day today. She travelled amazingly well. I’m really proud of her. This is going to be an adventure for all of us. Short. Whirlwind. Hopefully life changing. The journey to get here is just the beginning!”
Zach Tremblay of Robson, B.C., who also is awaiting a kidney transplant, was in Vancouver for the weekend in his role as the Children’s Organ Transplant Society’s 2022 Ambassador. He helped the society play host to its annual Classic Golf Tournament.
When at home in Robson, Zach, 19, makes the drive to Trail three times a week in order to undergo dialysis. Born with renal hypoplasia-dysplasia, he underwent a transplant on June 1, 2017. Unfortunately, there was a problem and the transplanted organ had to be removed.
His mother, Jana, told Gord McIntyre of Postmedia: “What should have been a fairly routine four-hour surgery lasted about eight hours. They finally came and found my husband and me to tell us that a technical error had been made during the surgery and it cut off the blood flow to the kidney.”
McIntyre added: “Two more surgeries were performed overnight trying to save the kidney. When a test the next morning showed the kidney was not functioning, Zach required a fourth operation within 24 hours to remove the failed organ.”
Now we are heading to the end of 2022 and Zach continues to wait for another chance.
If you are interested in being a living kidney donor, more information is available here:
Living Kidney Donor Program
St. Paul’s Hospital
6A Providence Building
1081 Burrard Street
Vancouver, BC V6Z 1Y6
Toll free: 1-877-922-9822
Vancouver General Hospital Living Donor Program – Kidney
Gordon and Leslie Diamond Health Care Centre
Level 5, 2775 Laurel Street
Vancouver, BC V5Z 1M9
604-875-5182 or 1-855-875-5182
Or, for more information, visit right here.
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