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

The Backmeyers “got the call!!!!” . . . Transplant may be next for Ferris . . . Kamloops parents continue search for kidney for son

LindsFerris
Mother and sleeping daughter, Lindsey and Ferris Backmeyer, before leaving for Vancouver and, hopefully, a new chapter. (PHOTO: Lindsey Backmeyer)

The phone call came and Ferris Backmeyer, her mother, Lindsey, and father, Pat, left their home in Kamloops for B.C. Children’s Hospital in Vancouver on Tuesday morning.

In the wee hours of that morning, Lindsey, below a photo of her and a sleeping Ferris, who is soon to turn four, posted on Facebook:

“We got the call!!! In a few short hours I will be waking this sweet girl up and packing her into the truck and driving her to BCCH . . . where hopefully she will get a beautifully healthy kidney!!!!”

Later on Tuesday morning, Lindsey’s father, Ken Maydaniuk, posted:

“This girl is on her way to the BCCH with mom and dad. A call came during the night that a they have a kidney for Ferris. Grandma and the bigs will follow. Fingers crossed for Ferris and family that the surgery will all workout. That’s a great Christmas gift. . . . We’re all very grateful for the massive support the family has received.”

Grandma is Lindsey’s mother, Leslie, while the “bigs” are Ferris’s older sisters Ksenia and Tavia.

Ferris, of course, is hardly a stranger to BCCH, having first been there when she was three weeks old. She was diagnosed with Mainzer-Saldino syndrome and it wasn’t long before she experienced kidney failure.

For the vast majority of her young life, then, Ferris has been on dialysis, mostly peritoneal dialysis (PD), something that can be done while at home and is done on a daily basis. On the occasions when there have been issues with PD, she has had to return to BCCH and transition to hemodialysis, at least until the PD situation was straightened out.

Of late, Ferris has been experiencing problems with PD, especially when it comes to draining, which means she has been retaining fluid. She was scheduled to return to BCCH early in January to be transitioned to hemo in an attempt to quell those issues. In time, and without a kidney available. it was hoped that she would be able to go back to PD and return home.

Now, however, it seems that there is a living donor who has passed all the tests and things just may be ready to go. It was almost a year and a half ago that the Backmeyers were given the OK to begin a public search for a donor, and that’s when Lindsey turned to Facebook in an attempt to find someone willing to offer up a kidney for her donor.

Now it seems as though the search may be over.

Ferris, you got this little girl!







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.

Ferris’s story continues with one more trek to Vancouver . . . Oh my, but she’s a trouper! . . . Can we find kidneys for her and others?

Ferris-061620-
Ferris Backmeyer, 3, is an Elmo fan. (Photo: Lindsey Backmeyer/Facebook)

Ferris Backmeyer, our favourite three-year-old, and her mother, Lindsey, spent a couple of days in Vancouver earlier this week. It was their first trip since the end of January; prior to that they had been there five times in four months.

As Lindsey put it in a Facebook post, the lack of travel has been the family’s “COVID silver lining.”

Shortly after birth, Ferris was diagnosed with Mainzer-Saldino syndrome, a disorder that impacts the kidneys, liver and eyes, and causes skeletal abnormalities.

She has been doing peritoneal dialysis (PD) since she was 14 months old, and now is on the active list as we try to find a donor — preferably a smaller adult — for a kidney transplant.

After their most recent trek to Vancouver, Lindsey posted an update on her Facebook page that I have edited for size:

“Ferris amazes me at how tolerant she is of medical appointments and procedures,” Lindsey writes. “We had nine hours worth of appointments in two days. So much of it is an adventure for her, especially since COVID — a major outing where everyone just oogles over how cute she is.

“She mostly has a ‘just do whatever you need to do’ attitude for ultrasounds, ecg’s, physical exams, vitals. Puts on the bravest face for needles and has been mostly getting through without any tears.”

However, it seems Ferris has thing about having her height measured . . . unless it’s at home.

“It’s like the biggest, most insane meltdown every single time,” Lindsey writes. “Exhausting. I’m certain I get the most accurate heights at home because she loves having her height measured at home! lol”

Lindsey writes that the trip was mostly uneventful.

“Renal management has been a little extra to manage lately — as in talking to them on the phone and by email every weekday for the past couple of weeks. It’s been a concern of mine that maybe they are thinking dialysis isn’t working very well. We’ve had a few episodes lately of inadequate fluid removal. They confirmed that it’s something that’s on the radar but we are seemingly back on track for now.

“They also assured me we won’t just treat numbers and we will go with how she’s feeling and she has been having some great days! However, only a few days of dialysis not working and she wouldn’t feel good at all. Everyone’s just got their fingers and toes crossed that PD will continue to work for her until she gets transplanted.”

Of course, Ferris has other issues than her kidneys, and vision is one of them.

“Ferris has retinal dystrophy and her vision is affected,” Lindsey writes. “So far we see difficulties in dim light and blindness in the dark. Her peripheral vision is also affected. That’s what we are observing, although I’m guessing with how adaptable she is, it’s probably worse than we even think. . . . I would say she definitely can see pretty well for the most part but we definitely can see some visual disability. . . . They have decided we should try glasses…so that’s up next!”

Lindsey also noted that they “met with anesthesia as well (for) a pre-transplant assessment. . . . He helped affirm my feelings that while she has risk factors, she’s been doing so well in a lot of ways. She handled anesthesia fine before, her heart is in better shape now, lungs are doing great, liver has chilled out with medication . . . no reason to believe she won’t have a successful kidney transplant!”

——

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


It was Saturday evening when I posted here about Dorothy and I knowing seven people awaiting kidney transplants.

The ink wasn’t dry, as they used to say in the newspaper business, on that post when I received a note from a hockey friend.

It seems he now is waiting and hoping, just like the others.

He was telling me I could “add another acquaintance to your list as I, too, now need a transplant.”

His GFR is at 12. If you aren’t familiar with it, GFR is Glomerular Filtration Rate and it is the measure of kidney function. In short, his kidneys are working at 12 per cent.

When Dorothy’s GFR got to 11 in 2009, the staff in the renal clinic here began preparing her for dialysis. Things have changed in the past few years and, depending on circumstances, some people have been kept off dialysis until their GFR slid to eight and even six.

He will be finding out in the immediate future “if they will begin dialysis.”

As I wrote, he now is waiting and hoping.

Waiting to find out about dialysis, all the while hoping for a transplant.

——

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


The list grew to nine on Sunday afternoon when I came across a story in Kamloops This Week on Rosalyn and Jim Butterfield, who have joined the Kamloops Kidney Support Group on occasion.

Rosalyn and Jim are working to find a kidney for their son, Mike, who is 44 and has polycystic kidney disease, which is commonly referred to as PKD. While his parents live in Kamloops, Mike lives and works in Vancouver. He now is in Stage 4, so the next step will be dialysis or a transplant.

Sean Brady’s story on the Butterfields is right here.

——

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


The list grew to 10 with the discovery that the son of family friends on the Prairies, who is doing hemo-dialysis, has begun the preliminary work involved in the process of having a transplant.

The point to all of this is that we all need to be aware that kidney disease isn’t going anywhere. In fact, the inroads it is making are scary as it becomes more and more of a factor in our daily lives.

Think about these numbers that I found on the Centers for Disease Control and Prevention (CDC) . . . Yes, they are American, but you would have to think the numbers for Canada are close to these . . .

15 percent of U.S. adults — 37 million people — are estimated to have chronic kidney disease;

Nine in 10 adults with CKD don’t know they have it;

One of two people with very low kidney function who aren’t on dialysis don’t know they have CKD.


Zach16



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