News on Ferris from Backmeyer family . . . They’re excited, but also ‘nervous, sad and scared!’

Ferris
FERRIS BACKMEYER: She may be getting closer to a kidney transplant. (Photo: Lindsey Backmeyer/Facebook)

I’m sure lots of us — heck, all of us! — could use some good news today.

Right?

OK, here you go . . .

Lindsey Backmeyer, via Facebook, told the world on Friday that Ferris, her three-year-old daughter, “is officially active on the deceased donor list!”

Lindsey added: “While I have very few details on this, I know she’s top of the list for her blood type and no one thinks we will wait long.”

The Backmeyers, including older sisters Ksenia and Tavia, live in Kamloops; in fact, father Pat often puts on the big suit and plays the role of Digger, the Blazers’ mascot.

Ferris, who does peritoneal dialysis, was found shortly after birth to have Mainzer-Saldino syndrome that results in kidney disease, eye problems and skeletal abnormalities.

Every night since Ferris was 14 months old, she has been hooked up to a cycler so that a fluid exchange can be performed via peritoneal dialysis while she is in bed.

This happens every night . . . at home or on the road. Last night, tonight, tomorrow night . . . no exceptions.

The Backmeyers also have been searching for a living donor through the Living Kidney Donor Program at St. Paul’s Hospital in Vancouver.

In February, Lindsey told Jill Sperling of CFJC-TV:

“It is preferred to have a live donor kidney. Those kidneys just typically transplant better, they do better and they typically last longer. So, for Ferris, she’s going to need more than one kidney transplant in her lifetime.

“Also, for her we need a small kidney, so a small human, a small person is what they’re kind of looking for.”

Now, though, Ferris, whose blood is B-, now is on the deceased donor list. Unfortunately, of course, a successful outcome for Ferris means that someone else is going to have to die.

The Backmeyers are fully aware that is part of having to deal with organ transplantation.

As Lindsey wrote: “With this comes so many emotions! (Older sister) Tavia says she’s excited for Ferris but also nervous, sad and scared . . . me, too, my big girl . . . me, too!”

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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

——

Upon seeing the news about Ferris, Jana Tremblay wrote: “Yay Ferris! We are so excited for you.”

Jana’s son Zach, 17, also is waiting and hoping for a kidney transplant. He recently had to make the transition from peritoneal dialysis to hemodialysis because the former was losing its effectiveness.

Zach and Jana, who are from Robson, B.C., spent four months in Vancouver dealing with the transition at B.C. Children’s Hospital. They now are back home and Zach travels to Trail, B.C., four times a week in order to do hemodialysis at Kootenay Boundary Regional Hospital.

If you have any interest in being a living kidney donor, just check out the above information and make the call or send an email. Do it even if all you want is some more information.

A three-year-old girl’s family and a 17-year-old young man and his family are waiting and hoping . . .


What’s it like having a kidney transplant with a pandemic raging all around you? . . . Michael McSherry, 32, had known for 14 years that he was in need of a transplant, so when he got only a few hours notice, he was ready to get to the Pennsylvania hospital. He was in only empty hallways, anyone near him wore a mask and his wife wasn’t allowed in the hospital to see him. . . . Most importantly, the surgery was a success. . . . Priscilla Liguori of ABC27 News has more right here.




Zach’s odds have gotten better, but he still needs a donor. Interested?

Our annual Kidney Walk has been turned into a virtual event that will be held on June 7.

Had it gone ahead on schedule in Kamloops on Sept. 23, Dorothy would have taken part for a seventh straight year since her transplant. Instead, she is working at fund-raising for the virtual event. This 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 are able to support Dorothy’s effort right here.


Zach16

 

Zach Tremblay’s transition to doing hemodialysis at Kootenay Boundary Regional Hospital in Trail, B.C., has been a success, his mother, Jana, reports.

The Tremblays live in Robson, B.C., which is located 33 km north of Trail.

Zach has four runs per week, each of them three to four hours in length.

“We drive him over, come home and go back later to get him . . . 16 trips back and forth a week,” Jana writes. “The Trail unit is full of lovely people and they have been exceptional in welcoming him/us and making it a less stressful transition.

“I am not allowed in with him because of the virus, so he has to go alone. He has his devices and snacks and off he goes.

“Not gonna lie . . . my eyes were full of tears and the lump in my throat was huge on Day 1, but has since shrunk to a pea size, with no tears now, every time we drop him off. He just makes us proud.”

Zach recently spent four months in Vancouver with Jana, as he went from peritoneal dialysis to hemo. And, of course, the search for a kidney for him continues.

On that front, Jana, reports . . .

“Now for the good news! Yes!! GOOD NEWS that we have been cradling and holding onto just a little while, because it just felt good for a change and we wanted to just enjoy it a while.

“A few weeks ago, Zach and I had a telehealth phone conference with his transplant doctor in Vancouver, Dr. Tom (Blydt-Hansen). Zach’s antibodies have come down. It doesn’t always happen, but it has and we will take it and feel blessed.

“This means the possibility of a match has become much bigger. Each time they come down, his donor pool widens — it’s really exciting biology stuff.”

What this means is that the odds of there being a match for him have improved considerably. Prior to the antibodies coming down, one person in 7,000 tested donors may have matched. Now it’s five in 1,000.

Jana adds: “They are now going to revisit anyone previously tested to see if they have become more compatible. They will also start testing new candidates, and continue with the paired exchange testings.

“If you’ve ever considered getting tested, please think about it now and help save our boy. His grad year is coming up and how wonderful would it be for this to be behind us and for him to just enjoy it.”


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


Leonard Pitts, a columnist with the Tampa Bay Times, sat down at his keyboard the other day and tapped out a column that really resonated with me.

Here are the first three paragraphs:

“Someday, I’m going to die.

“This, I grudgingly accept. I have no idea how it’s going to happen. Maybe I will die of having a tree fall on me, of eating tainted shellfish, or of being struck by lightning. But this much I guarantee. I will not die of having wagered my life that TV carnival barkers, political halfwits and MAGA-hat-wearing geniuses know more than experts with R.N.s, M.D.s, and Ph.D.s after their names.

“In other words, I will not die of stupid.”

The complete column is right here.






Welcome back! Zach and his mother finally are home . . . Green Shirt Day moves online

ZachHome
Zach Tremblay and his mother, Jana, were riding high on Saturday as they headed home for the first time in almost three months. (Photo: Jana Tremblay/Facebook)

There was some good kidney news on Saturday as Zach Tremblay and his mother, Jana, headed home to Robson, B.C., after spending almost three months in Vancouver.

Zach, who turned 17 while they were living at Ronald McDonald House, was transitioned from peritoneal dialysis (PD) to hemodialysis while in Vancouver.

Zach had been doing PD at home in Robson, which is across the Columbia River from Castlegar. However, as 2019 wound down there were some issues and his medical team decided that PD was losing its efficiency. So they changed him over to hemo.

Unable to do hemo at home in Robson meant that he would have to travel to Trail and the Kootenay Boundary Regional Hospital there. However, the unit there wasn’t able to free up room until now. Zach will be travelling three times a week to Trail for hemo, with his first run on Tuesday.

Jana announced their departure via Facebook:

“So this is happening!! Homeward bound with Dad!! Trail is ready for Zach so we are home to stay for now. Thank you all for your love and support over the past few months.

“We appreciate each and everyone of you.”

Now . . . if only we can find a kidney for Zach.

——

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





Message from a loving Mom: Photos of her son show why we need to stay home . . . #Flattenthecurve

Zach1

By now, if you are a regular here, you know Zach and Jana Tremblay’s story. . . . From Robson, B.C., Zach and his mother have been in Vancouver since early January while Zach was transitioned from peritoneal dialysis to hemodialysis. . . . They now are living at Ronald McDonald House while Zach does his dialysis runs at B.C. Children’s Hospital. . . . In time it is hoped two things will happen: They will be able to return home with Zach doing his dialysis runs at a hospital in Trail and Zach will undergo a kidney transplant.

Zach2In the meantime, here’s a message from Jana to accompany the two photos of Zach:

“This is what Intubation ICU Life Support looks like! Please listen and stay home.

“Have you ever seen your child Intubated?

“I have and trust me . . . you want to stay home.”

#STAYHOME #TeamZach #SocialDistancing

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Rita Lowe Bowen is one of Jana’s many friends. She posted this note on Facebook this week, to accompany the above photo:

“We talk about our sweet friend, Zach, and how he needs to find his donor, but today Zach gave his mom, Jana, permission to share a different picture. This isn’t Zach’s face in a picture, smiling across the table from you. This is Zach in September, in critical care, where he has been twice in the last 6 months. When you need some motivation to stay home, think of Zach and Jana. Stay home. #Flattenthecurve.”

——

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 Kamloops Kidney Support Group has cancelled its next get-togethers that were scheduled for April 8 and 11 at Chances (Barside Lounge and Grill), 1250 Halston Ave., due to the COVID-19 situation. . . . The KKSG meets on the second Wednesday (10 a.m.) and second Saturday (9 a.m.) of every month, always at the Barside Lounge and Grill.


The Kidney Foundation, BC & Yukon Branch annual general meeting will be held online on May 2. If you are a member of the foundation, you will be able to participate via Skype or conference call. . . . If you aren’t yet a member, you are able to update your membership prior to the meeting, but have to do it before April 24.



Happy birthday, Zach, and here’s to many more . . . Robson teen just keeps on smiling . . .

Cake

Zach Tremblay turned 17 on Wednesday.

Celebrate?

Well, he was in Vancouver. But, of course, a lot of places for celebrations in the big city are shut down or takeout only.

Oh, and he also had to spend part of his day doing dialysis.

Run
Zach Tremblay had to interrupt his birthday celebration on Wednesday in order to do a dialysis run. (Photo: Jana Tremblay/Facebook)

But there still was cake and goodies and lots of fun at Ronald McDonald House.

Zach is from Robson, B.C., which is across the Columbia River from Castlegar. He and his mother, Jana, have been in Vancouver since early in January. He spent some time in B.C. Children’s Hospital, where they transitioned him from peritoneal dialysis (PD) to hemodialysis.

Now that he’s on hemo, he won’t be able to do dialysis at home, something he did while he was doing PD.

The reason he and his mother haven’t been able to return home is that Zach will have to travel to the Kootenay Boundary Regional Hospital in Trail to do hemo, but . . .

“We were told Trail doesn’t accept patients who are not 17 years old plus a day,” Jana told Gord McIntyre of Postmedia in February. “Zach turns 17 on March 18.”

The dialysis unit in Trail has eight chairs and there apparently have been discussions about adding a ninth, which would ease some of the load there.

Of course, in a perfect world, Zach would have gotten word on his birthday that a donor had been found. As it is, we still wake up every day hoping that a match has been discovered.

In the meantime, Zach and Jana remain in Vancouver. But, as Jana points out, considering the situation in which we find ourselves these days that may not be a bad thing.

“We are thinking he’s safer here for now where he is still child priority,” she told me. “Going home means doing dialysis in a unit of older people mostly and it’s not the safest place for him to be. Here he gets good dialysis and is near a children’s hospital as this virus spreads.”

——

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




All about washing your hands, suppressed immune systems and a Kidney Gala . . .


Have you ever wondered what life is like for a transplant recipient — be it heart, lung or kidney — living with a suppressed immune system? . . . “For transplant patients,” writes Blair Crawford of the Ottawa Citizen, “the fear of infection is a daily fact of life. They all take drugs to suppress their immune system to reduce the risk their new organ will be rejected. (Tina) Proulx’s life depends on the Purell hand sanitizer and Lysol and Clorox wipes that are now being swept off store shelves and stockpiled by panicked shoppers.” . . . Proulx has a double lung transplant in December 2015. . . . Crawford has written a terrific piece that explains it all, and it is right here.


The eighth annual Kidney Gala was held in Vancouver recently, and Fred Lee, who handles Fred Lee’s Social Network for the Vancouver Province, was one of the co-hosts.

Stephen Gillis, who 17 days earlier had undergone a kidney transplant, and Michael Teigen, who was Gillis’s donor, were on hand and received a stirring standing ovation.

For more on the Kidney Gala, including photos, click right here.

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BTW, congrats to Stephen Gillis and his Vancouver Minor Atom A1 hockey team for their championship. They won the PCAHA Presidents Series title earlier in the week.

If you have been following Gillis’s story over the past year you know just how much this hockey team means to him.

Here’s a bit of what Gillis posted on Facebook:

“Thank you to our friends at Burnaby Winter Club for a spirited series. You’re a team of class and sportsmanship and it has been great to play you all year. Thank you for your team’s kindness and support during my health journey.

“So proud of our squad. On and off the ice they gave 110% and would never quit. This was a special team. Excited to see the great things these kids achieve. Stay relentless.

“Thank you to my amazing parent group for an outstanding season. It was a privilege to coach this team and you all jumped on board with my plan. I am so grateful for your support of the team, our culture and mission, and the constant support, kindness, and generosity you have shown me throughout my health issues. Truly, thank you.

“We dedicated tonight’s victory to young Zachary Tremblay and his mother Jana. Zach has become a hero to our team. At 16, he is currently on dialysis and is in need of a kidney donor (O negative or positive blood). We want to help Zach’s message and find him a heroic donor. Please spread the word and let’s find Zach a donor.”

——

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


Harry Bryant, a grandfather who lives in Vernon, B.C., has turned to Facebook in an attempt to find a living kidney donor. If you’re on Facebook, you are able to check out his page — Grandpa Needs a Kidney. . . . Caitlin Clow of the Vernon Morning Star recently did a story on Bryant, and it’s all right here.





Zach Tremblay: Negative thoughts equal negative outcomes . . . I try to be as positive as I can . . .

It was World Kidney Day on Thursday, which may have gotten lost in everything that was going on in this suddenly bizarro world in which we live.

But our friend Zach Tremblay was featured on the CTV News out of Vancouver, and it was a terrific piece.

If you aren’t aware, Zach is from Robson, B.C., which is just across the Columbia River from Castlegar. He and his mother, Jana, have been in Vancouver since the first week of January. While there, he was transitioned from peritoneal dialysis to hemodialysis.

Zach, soon to turn 17, has been fighting kidney disease for years and is need of a transplant.

“Become a donor,” he says in the CTV story, “Not just for me but there’s other people who need it just as much as I do.”

And then there was this:

”I’ll always have the mindset of negative thoughts equal negative outcomes . . . .so I try to be as positive as I can.”

Take a couple of minutes out of your day and watch the story on this remarkable young man. It 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