Tag: Living Kidney Donor Program

Sunday a day of freedom for Ferris . . . Zach needs a kidney, too . . . Want to help? Please contact Living Kidney Donor Program

The Backmeyers have found some freedom in Vancouver with Ferris being treated as an outpatient, at least for now.

Ferris, 3, slept on a couch on Friday night, a rarity for a child who has been on dialysis since she was 14 months old. Today (Sunday), she won’t have to dialyze and I really would love to know what will be going through her mind as she spends one entire day without having to hook up to a cycler for peritoneal dialysis (PD) or a hemodialysis machine.

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Ferris spent some time doing kid things the other day in Vancouver. (Photo: Lindsey Backmeyer/Facebook)

The Backmeyers are from Kamloops. Ferris is in need of a kidney transplant. She had been doing PD at home, but she got hit with an infection, so Mom and Dad (Lindsey and Pat) had to take her to B.C. Children’s Hospital a week ago. There, doctors removed her PD catheter and transitioned her to hemodialysis, at least for the short term.

Lindsey informed Facebook followers early Saturday that they will take Ferris to BCCH on Monday, Wednesday, Friday and Saturday for hemo, with each run taking about three hours. Including pre- and post-, it takes about 3.5 hours. That is quite a change for a little girl who is used to being hooked up to a cycler for about 12 hours a night.

“Still gives us a decent amount of time out,” Lindsey wrote.

She added that they spent some time out Friday evening “and I think it’s safe to say we are all more comfy here! Now if it would only stop raining!!!!”

They almost certainly will be in Vancouver for another few weeks.

“The most current plan is to admit her during the first week in August and reinsert her PD catheter,” Lindsey wrote. “If it goes well we could be home mid-August. While it’s not a set-in-stone plan . . . it’s the one we have for now!”

On Thursday, Lindsey had written that “Ferris is slowly feeling better each day. She hasn’t had any Tylenol since noon (Wednesday) and has only cried a couple times in pain. . . .

“She’s still really low on physical energy but she continues to eat! We are back to full feeds and she’s still eating a ton. She’s eaten half a chicken in three days. . . . She’s constantly yelling for different foods . . .”

This will be a big week for Ferris as her big sisters are scheduled to arrive on Wednesday.

According to Lindsey: “Ferris asks about them a lot. They worry about Ferris and us when we are down here. It’ll be better for everyone if we are together. We had already discussed the possibility of spending the summer here if a transplant were to happen. Kinda preparing them that all our summer camping plans might be derailed. So this isn’t totally unexpected.

“The realization that we are here for awhile has been a huge pill to swallow. In fact I haven’t really yet. I’m still looking at how big it is!! For now, we plan for next week and hope that Ferris gets a bit stronger each day!”

——

Meanwhile, Zach Tremblay, now 17, continues to trek from his home in Robson, B.C., to Trail to do dialysis as he waits and hopes for a kidney transplant.

You bet that Zach can relate to what Ferris is going through, because he was transitioned from PD to hemo early this year.

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If you are at all interested in being a living kidney donor, contact the Living Kidney Donor Program at St. Paul’s Hospital in Vancouver. You don’t have to make an immediate commitment, but the folks there are able to prove you with more information and answer any questions you may have.

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

There are a lot of tests involved in finding out whether a potential kidney donor and recipient are a match. Three of those are blood tests — blood typing, tissue typing and cross-matching. . . . There’s a lot more on that right here.

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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?

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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.

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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.

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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.

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Western kidney walks cancelled, go online . . . Transplants in B.C. on case-by-case basis for now

Kidney walks that were scheduled to be held in B.C., the Yukon, the Territories, Alberta and Saskatchewan in 2020 have been cancelled.

That includes the annual Kamloops Kidney Walk, which was to have been held at McDonald Park on Sept. 20. Most other walks had been scheduled for June 7.

The Kidney Foundation of Canada, BC & Yukon Branch now has partnered with foundations in Alberta and Saskatchewan, and all will be holding virtual walks on June 7, leading up to them with a Walk the Block campaign.

“Our kidney community needs our support more than ever,” reads a release from the foundation. “With growing economic and health-related uncertainties impacting kidney patients, we know the need for assistance will grow in the coming months. Kidney Walk is a significant source of revenue, which allows us to provide our vital support programs to patients.”

For more information, feel free to visit kidneywalk.ca or the Walk the Block page that is right here.

Dorothy, my wife of more than a few years, was preparing to take part in her seventh straight Kidney Walk. Despite the Kamloops Walk having been cancelled, she still is fund-raising, which is her way of giving back because she has been there and knows how many kidney patients this money helps support.

If you like, you may donate to Dorothy’s team right here.

Organ transplants in B.C. are pretty much on hold these days, with everything being looked at on a case-by-case basis. . . . Maria Weisgarber of CTV News Vancouver writes:

“BC Transplant told CTV News Vancouver ‘urgent and life-saving’ donations and transplants are moving forward on a case-by-case basis right now, if deemed safe and appropriate by care providers. The organization said the decision to take the case by case approach is ‘not one health care professionals take lightly, because we know how important these surgeries are for people who are waiting for a transplant.’ ” . . . As Weisgarber explains, this means that the process of screening donors also is on held. . . . Her story 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

Tri-City goaltender strikes up friendship with youngster with one kidney . . . Ayres’ tour stops in Calgary and Saskatoon

The 2020 Kidney Walk Kamloops is scheduled for Sept. 20 at McDonald Park. My wife, Dorothy, will be three days away from the seventh anniversary of her kidney transplant, as she takes part for a seventh straight year. . . . BTW, she is one of the event’s organizers, and she also is a co-founder of the Kamloops Kidney Support Group. . . . She would never tell you this, but I will — she has been the biggest individual fund-raiser in Kamloops for each of the past six years. . . . If you would like to support her in the 2020 Kidney Walk, you are able to do so right here.

Carson Moore is a huge fan of the Tri-City Americans. He also is a six-year-old who was tri-cityborn with one kidney. According to his mother, Kelli, doctors feel that Carson could need dialysis by the time he reaches puberty and, at some point, he will need a transplant. . . . For now, though, he has a new friend in Talyn Boyko, the Americans’ sophomore goaltender. . . . Their relationship began before Boyko was aware of Carson’s health issues, with the player handing over an autographed stick at one point. Later, Boyko got a note from Kelli telling him about Carson’s situation and just how much the gesture meant to the Moore family. . . . “I’d be lying if I said I wasn’t in tears. It was really special for me to read that,” Boyko told sportscaster Cooper Perkins, who has done up a terrific piece on the relationship that has grown between Moore and Boyko. . . . Check it out right here.

David Ayres was in Calgary on Friday, along with Toby Boulet, as the promotional buildup began for the second annual Green Shirt Day on April 7. This all is in honour of Toby’s son, Logan, who was a victim of the bus crash involving the Humboldt Broncos almost two years ago. . . . Ayres, of course, was the EBUG who played some goal for the NHL’s Carolina Hurricanes on Feb. 22 in a 6-3 victory over the host Toronto Maple Leafs. Ayres had a kidney transplant in 2004, with his mother serving as his donor. . . . Logan Boulet had registered as an organ donor prior to losing his life in the bus crash; his organs went to eight different people. . . . Jason Herring of the Calgary Herald has more right here.

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Later Friday, David Ayres’ tour took him to Saskatoon where he did some organ donor promotion at the Blades’ game that evening and was at the Saskatoon Rush’s lacrosse game on Saturday night. . . . Kevin Mitchell of the Saskatoon StarPhoenix, one of Canada’s top wordsmiths, caught up with Ayres and wrote this piece 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

Remember that you don’t have to be a match to specific recipient in order to be a kidney donor . . .

Eight days after being the donor and recipient of a kidney transplant at Vancouver General Hospital, Michael Teigen and Stephen Gillis appeared on CTV Morning Live on Wednesday.

Gillis, the recipient, and Teigen both are doing well and are walking billboards for the entire process.

The conversation — and this is really good stuff — is right here.

The Children’s Organ Transplant Society issued this release on Tuesday:

“We have been receiving a lovely number of messages asking about how to be tested as a living kidney donor for Zach Tremblay. Thank you to our community for spreading the word! However, as a charity we cannot provide confidential medical information about Zach’s history or present condition, as well as any other transplant children. Please know that we would love to direct you to the right place, but cannot answer questions about Zach’s personal health. If you would like to apply for living donation, please contact St. Paul’s Living Donor Program.”

So here’s the deal . . .

You don’t have to be a match to Zach if you are interested in helping him. If you aren’t a match, you are able to help him through the Living Donor Program. If you were deemed to be an eligible donor via that program, you would donate a kidney to someone else, quite likely a stranger, but on the condition that Zach got a kidney.

That is exactly how my wife, Dorothy, received a kidney more than six years ago. Her best friend donated a kidney through the Living Donor Program at St. Paul’s Hospital in Vancouver. That kidney went to a stranger, while Dorothy received a kidney from another stranger.

So remember . . . you don’t have to be a match in order to help Zach, a 16-year-old from Robson, B.C., who has been in Vancouver since early January. He has transitioned from peritoneal dialysis to hemp-dialysis, but won’t be going home until there is room for him in the dialysis unit at the hospital in Trail.

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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

OrganDonation

Transplant really a kidney miracle . . . Others, like Zach Tremblay are waiting, hoping . . . Can you help?

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Kara looks over her new piano on Christmas morning, as her Dad and Grandma look on.

If you are a regular here, you will be aware that Dorothy, my wife of 47 years, underwent a kidney transplant on Sept. 23, 2013.

If you’re not, well, here’s the story . . .

We will be forever grateful to the two people most responsible for what really has been a

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Grandma giving Kara a lesson in September 2018.

new lease on life. Dorothy’s best friend, who has been a bestie for a long, long time, was convinced from the outset that she would be the donor. However, as it turned out, she wasn’t a match for Dorothy.

Still, she wanted to make sure that Dorothy got a new kidney. So they both went into the Living Kidney Donor Program. And that is how Dorothy came to get a new kidney.

Her best friend, who has never wanted attention for what she did, gave a kidney to a stranger, but on the condition that Dorothy get one from someone else, which is what happened. We don’t know who got the friend’s kidney; we don’t know who was Dorothy’s donor.

But as far as Dorothy is concerned, her best friend was her donor.

What has a new kidney meant for Dorothy?

For starters, it got her off dialysis. She had done peritoneal dialysis (PD) for four years prior to the transplant.

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Kara, with one of her first gifts from Grandma.

It also meant that she was here for the birth of her first grandchild — Kara. She lives with her father, our son Todd, and his wife, Joanna, in Burnaby.

It also has allowed Dorothy to experience, among so many other things, the joy of four Christmases with an energetic and oh, so happy Kara.

Dorothy plays piano by ear and really loves it. She volunteers at a seniors’ residence in Kamloops and often is asked to play piano there. Her love for the piano has meant that her granddaughter has twice received small ones for Christmas, including a toy miniature grand this time around.

What I am trying to say through this meandering message is this: I would hope that you would at least consider being a live kidney donor. The difference such a decision could make in another person’s life is incalculable.

Remember that a transplant isn’t a cure for kidney disease. There quite simply isn’t a cure. Still, a transplant is nothing short of a miracle for the recipient.

Yes, Dorothy and I experienced a miracle more than six years ago and we are thankful every day.

So, please, at least think about it.

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There are a lot of people out there who are waiting and hoping. They awaken every single day and wonder if this will be the day they get THE phone call . . . a match has been found . . . there’s a date for surgery . . . the load has started to lift.

People like Zach Tremblay, a 16-year-old from Robson, B.C., which is across the Columbia River from Castlegar. Zach now spends more than half of every day doing dialysis.

On Saturday, Zach’s mother, Jana, posted this update on Facebook:

“As 2019 draws to a close, and we enter the 5th year of dialysis, I can’t help but be a little sad we are still waiting. So many shares, so many messages from people asking how to be tested, and no matches so far.

“2019 was rough on him. September’s scare and hospital stay being especially trying, and bringing about many changes in his energy level, anxiety and, in turn, his therapy.

“He now does 14 hours of therapy a day. So he spends more than half his 24-hour day doing dialysis. No 16-year-old should be spending the majority of his time doing this.

“Please share his story far and wide and as often as possible and help us make 2020 HIS year.

“May 2020 bring nothing but great things to you all . . . and as always, we appreciate each and every one of you for staying on the ride and loving and supporting our boy and our family.”

(I wrote about Zach in October, and you can find that piece right here.)

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Joan Alexander, a friend of Jana’s, followed with this:

“As my two-year anniversary as an anonymous kidney donor gets closer, I am beginning Zacha social media blitz to get Zachary Tremblay the kidney he needs!

“My journey began because of Jana Tremblay’s posts about organ donation. As the mother of two healthy sons, I immediately was drawn into this family’s story. Although I was not able to donate to Zach directly, I decided to donate anonymously and someone in British Columbia became my recipient.

“How can you help? Share this post, make (the accompanying two-year-old) photo of Zach your profile pic, learn more (call the St. Paul’s Living Donor Program), get tested, say a prayer or make a wish . . . all of this and more will help.

“It is no small thing to donate an organ. But I would do it again in a heartbeat if I could! Message me if you would like to talk.

“Zach now is 16 years old. He is hooked up to dialysis 14 hours each and every day.”

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As we prepare to head into a new year, it would be terrific if it really became a year to remember for people like Jana and Zach Tremblay and their family.

If you are interested in more information, here you go:

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

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