Kamloops kidney news: Rosalyn, Jim and friends go walking; Ferris goes to Toronto; Zach goes golfing

Walk
The Butterfields — Rosalyn (left) and Jim (third from left) — were joined by family and friends for a Hike4Mike at McArthur Island in Kamloops on Sunday.

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,

Donor
Rosalyn and Jim Butterfield had this sign installed in the rear window of their vehicle as they searched for a kidney for their son, Mike.

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.

Ferris
Lindsey Backmeyer and her daughter, Ferris, enjoyed a quiet flight to Toronto on Saturday. (Photo: Lindsey Backmeyer/Facebook)

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
Zach Tremblay looks to be enjoying himself as he helps play host to the Children’s Organ Transplant Society’s annual golf tournament. He is the society’s 2022 Ambassador. (Photo: Children’s Organ Transplant Society)

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.

Zachposter2





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

Tel: 604-806-9027

Toll free: 1-877-922-9822

Fax: 604-806-9873

Email: donornurse@providencehealth.bc.ca

——

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

kidneydonornurse@vch.ca

——

Or, for more information, visit right here.


Want an easy win to feel great? Register to be an organ donor today. It will only #TakeTwoMinutes and you could save a life. Great deed and fuzzy feels without any hassle. #Register2Give taketwominutes.ca

Can polycystic kidney disease be reversed? Researchers make diet-based discovery

The Kamloops Kidney Support Group gathers twice a month and we almost always have someone there who has been diagnosed with polycystic kidney disease (PKD) or has a family member with it.

According to the Kidney Foundation of Canada:

PKD “is a genetic disorder that causes multiple cysts to form in the kidneys. Polycystic kidneys become very large, have a bumpy surface and contain many fluid-filled cysts. This can be associated with a number of conditions, including: High blood pressure, urinary and kidney infections, kidney stones, and kidney failure.”

Also from the foundation’s website: “PKD can strike anyone at any time. About five per cent of all people requiring dialysis or kidney transplantation have PKD.”

(That info, and more, can be found right here.)

Last week, though, there was some big news involving PKD.

In a piece headlined ‘Reversing polycystic kidney disease,’ Sonia Fernandez of the U of California Santa Barbara writes:

“Thanks to research conducted by UC Santa Barbara biochemist Thomas Weimbs, postdoctoral researcher Jacob Torres and their team, a solution may be no farther than the end of your fork. Diet, they discovered, could hold the key to treating PKD.”

Until now, PKD, as Fernandez writes, “has long been thought to be progressive and irreversible, condemning its sufferers to a long, slow and often painful decline as fluid-filled cysts develop in the kidneys, grow and eventually rob the organs of their function.”

The only options, at this point, are dialysis or a kidney transplant.

Now, though, scientists believe that they have “identified the specific metabolic process responsible for slowing the progress of the disease” in mice.

As Weimbs told Fernandez: “There’s a way of avoiding the development of the cysts through dietary interventions that lead to ketosis.”

Fernandez added: “You heard that right: Ketosis, the underlying metabolic state of popular diets such as the ketogenic diet, and, to a lesser extent, time-restricted feeding (a form of intermittent fasting), has been shown in the Weimbs group’s studies to stall and even reverse PKD.”

Fernandez’s complete story is right here.

Kidney disease hasn’t slowed own our girl Maggie. . . . Take a moment for PKD Awareness Day

Allow me to introduce you to our good friend Margaret (Maggie) Thompson.

She and my wife, Dorothy, have forged quite a friendship, one that began because they have something in common — both have had kidney transplants.

Dorothy had one six years ago; Maggie underwent one more than eight years ago.

A few years ago, they got together, along with Edna Humphreys, and started the Kamloops Kidney Support Group in an attempt to help others who are dealing, directly or indirectly, with kidney disease. To say the KKSG has been a success would be something of an understatement.

Dorothy and Maggie both did peritoneal dialysis before being cleared for transplant, and both are representative of how having kidney disease doesn’t have to slow one down.

Having said that, though, Maggie is in a league of her own.

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Maggie Thompson, with the Blue Bomb before parting with it last week. (Facebook photo)

In brief, here is a definition of peritoneal dialysis from kidneyfund.org: “Peritoneal dialysis (PD) is a treatment that uses the lining of your abdomen (belly area), called your peritoneum, and a cleaning solution called dialysate to clean your blood. Dialysate absorbs waste and fluid from your blood, using your peritoneum as a filter.”

A catheter is surgically implanted into our peritoneum that will allow you to do fluid exchanges. You learn how to do PD manually four times a day before being given a cycler that allows you to do it while sleeping at night. And the only way it limits your ability to travel is if you allow it to, something Maggie wouldn’t do.

A Harley-Davidson rider and owner, Maggie took a lengthy trip with friends into the U.S. a few years back. She drew up a travel schedule and arranged with Baxter, the company that provides PD supplies, to make fluid drops at various stops. Friends constructed a trailer that she towed behind her Harley; it contained other needed supplies.

As the friends travelled, then, they would stop to allow Maggie to do her exchanges.

Since having her transplant in July of 2011, Maggie hasn’t slowed down at all. She moved to Edmonton early in 2018, but makes regular visits to Kamloops, where she had lived for 30 years. Earlier this summer, she took two grandsons to the Calgary Stampede — yes, she also has a car — and then on a tour around Vancouver Island that included a stop in Tofino.

Maggie
Maggie Thompson, with her new ride, Sassy Sapphire. (Facebook photo)

Late last week, Maggie rode her Harley — she called it the Blue Bomb — to Kamloops, where she visited the local dealership and traded it in on a Freewheeler Trike that she has dubbed Sassy Sapphire.

After a few days with us, Maggie climbed aboard Sassy Sapphire on Tuesday morning and headed home to Edmonton. She arrived early last evening having been on the road for almost 12 hours.

No, kidney disease hasn’t slowed down Maggie Thompson in the least.


It is National Polycystic Kidney Disease (PKD) Awareness Day in various parts of the world today (Wednesday, Sept. 4).

According to a news release:

“Since 2014, Health Canada has recognized September 4 as National Polycystic Kidney Disease (PKD) Awareness Day – a special day devoted to raising awareness of this life-threatening, genetic disease.

“Polycystic kidney disease (PKD) is a chronic, genetic disease causing uncontrolled growth of fluid-filled cysts in the kidneys, often leading to kidney failure. With 66,000 Canadians and millions worldwide living with PKD today, chances are high that you know someone with the disease.

“The more who know about PKD, the more resources we can dedicate to finding treatments and a cure. PKD Awareness Day is our opportunity to step up our efforts and gives us a platform to widely spread the word, share stories and encourage others to learn more. On PKD Awareness Day, let’s come together as a united front to spread the word about this disease further than we ever have before!

“Since its creation in 1993, the PKD Foundation of Canada has raised more than $1 million towards research, support and help for families living with PKD. From the first research grant awarded in 1999, the PKD Foundation of Canada has set up chapters and support groups across the country, built an expansive and passionate volunteer network, and connected with PKD groups around the world to support our most notable fundraising event – the Walk to END PKD.

“Today, the PKD Foundation of Canada is the only national organization solely dedicated to fighting PKD through research, education, advocacy, support and awareness.”

In Kamloops, locals involved in the PKD Foundation will appear before City Council on Sept. 10 in an attempt to spread awareness.


Here in Kamloops, preparations are well underway for the annual Kidney Walk, which is scheduled for Sept. 22 at McDonald Park. . . . If you would like to take part, we register at 10 a.m., with the walk to follow at 11. Some of us will walk a couple of kilometres, but there isn’t a defined distance. In fact, you don’t need to walk at all. Just come and join us for the breakfast — pancakes, bacon and coffee, by donation — with the Brock Central Lions Club doing the cooking. . . .

My wife, Dorothy, will be celebrating the sixth anniversary of her kidney transplant by taking part in her sixth straight Kidney Walk. In her six walks, she has raised more than $15,000. If you would like to support her, you may do so right here.




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