Emotions of a kidney mother: ‘I go from being so sick of dialysis and ready for a better life to full-on terrified.’

Ever wonder what it’s like to be a parent to a youngster with kidney disease? Here’s an emotional posting from Lindsey Backmeyer of Kamloops, whose daughter, Ferris, 3, is in need of a transplant and continues to do daily peritoneal dialysis at home:

“So it’s pretty official and looking like Ferris will be listed on a deceased donor list in early March!!

FerrisJan2020
Ferris Backmeyer, 3, is about to go on a deceased donor list in the hopes of finding a kidney match. (Photo: Lindsey Backmeyer/Facebook)

“I can’t accurately put into words how that makes me feel but I’ll try. I go from being so sick of dialysis and ready for a better life to full-on terrified.

“Literally as soon as a month from now our whole world can get blown apart. Sounds dramatic but that’s how it’ll feel. I’ll have to hand my daughter’s life over to surgeons hoping they do some of their most amazing work. We will fear for her life. Full on fight or flight mode. I don’t know how anybody can feel ‘ready’ for that.”

Lindsey added that her husband, Pat, “should know by end of April whether or not he (can) donate through the paired exchange program. If he is approved we will likely temporarily come off the (deceased donor) list and do a round of that to see if a match can be made.

“A live donor really is what’s best for Ferris so we remain hopeful one can be found. As of our meeting on Friday there aren’t any living donors approved to donate to Ferris.

“Please share to help find my girl the kidney she so desperately needs!”

——

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


If you’re a regular here, you are well aware of the travails of Zach Tremblay, 16, and his mother, Jana. They are stuck in what Jana calls “IHA limbo” as they wait until the Kootenay Boundary Regional Hospital gives the OK for him to begin hemo-dialysis treatments there. . . . They have been in Vancouver since Jan. 6 and it seems they may be there until at least the end of March. . . . Gord McIntyre of Postmedia has more on their story right here.


Dr. Anson Cheung, one of two heart surgeons at St. Paul’s Hospital in Vancouver, performed four heart transplants in a 60-hour stretch in the autumn of 2019. . . . “I even did open-heart surgeries during that time,” Dr. Cheung told Susan Lazaruk of Postmedia for a wonderful story that is right here. . . . One of the heart transplants involved Prem Sagar of Surrey, who underwent surgery on his 68th birthday.


Zach, Jana enjoy night to remember with Canucks . . . Albertan hoping billboard helps search for kidney

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Jana and Zach Tremblay got to cheer on the Vancouver Canucks from almost front tow seats at Rogers Place on Monday night. (Photo: Jana Tremblay/Facebook)

Zach Tremblay and his mother, Jana, remain ensconced in Ronald McDonald House in Vancouver, although they did venture out on Monday night to watch the Canucks beat the St. Louis Blues, 3-1, in what was an entertaining game.

Zach, all decked out in an Elias Pettersson sweater, and Jana took in the action from near the penalty box in Rogers Arena.

Zach, 16, and Jana are from Robson, B.C., which is across the Columbia River from

ZachTanev
After Monday’s NHL game in Vancouver, Zach Tremblay got to spend some time with Canucks defenceman Chris Tanev. (Photo: Jana Tremblay/Facebook)

Castlegar, which just happens to be the hometown of Canucks head coach Travis Green.

Yes, it’s a small world. How small? The Greens lived across the street from Jana, who tells me that she used to babysit Travis and his brother David.

After Monday’s game, Zach and Jana were taken to the players’ area for a meet-and-greet where he visited with Canucks defenceman Chris Tanev.

“What a great guy he was,” Jana posted, “so friendly and just chatted with Zach.”

And how did Jana sum up the whole thing when it was over.

“It was so cool to see (Zach) take this all in,” she wrote. “Overwhelming really. And when Zach16we got home the emotions of it all hit me, and I was the messy mom.”

If you’re a regular here, you will know that Zach and Jana have been in Vancouver for a few weeks now. They started out at B.C. Children’s Hospital, then moved to Ronald McDonald House as Zach transitions from peritoneal dialysis (PD) to hemodialysis, all of this while he waits and hopes for a new kidney.

Earlier Monday, Jana reported that “hemodialysis is going very well. He is tolerating it very well, his numbers are fantastic and he feels better than he has in a long time . . . eating more, lots of energy. So good to see . . . our boy is back.”

Prior to this stint in Vancouver, Zach had been doing PD at home in Robson. When they get back home, he will be doing hemo at the hospital in Trail; however, there doesn’t seem to be any hint as to when that will happen.

“Trail’s (dialysis) unit is full right now — eight chairs and a full schedule with people on the wait list,” Jana noted. “They are currently installing a ninth chair and training new staff.”

Jana continued: “This of course takes time, so we are literally in IHA (Interior Health Authority) limbo while this all happens and they have room for Zach in their schedule . . . patience is apparently a virtue . . .”

——

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





Zach closer to going home, but still needs kidney . . . Surgeon reflects on all he has seen, done and more

ZachT
These days, Zach Tremblay is kicking back at Ronald McDonald House in Vancouver. (Photo: Jana Tremblay/Facebook)

Zach Tremblay has been discharged from B.C. Children’s Hospital in Vancouver, but isn’t yet able to return home to Robson, B.C.

Zach, 16, had been doing peritoneal dialysis until it recently became ineffective. So

ZachTremblay
Zach Tremblay is 16 now, and he still needs a kidney. The phone numbers will get you to the Live Donor Exchange Program at St. Paul’s Hospital in Vancouver.

during his most-recent stay at BCCH, he has been transitioning to hemodialysis.

His mother, Jana, has been keeping family and friends up to date by posting on Facebook. On Saturday, she wrote that they now are staying at Ronald McDonald House . . .

“Who’s a rock star . . . yup it’s our kid — we are officially discharged to RMH! He is doing hemo 4 times a week right now, 3.5 hours each session, and tolerating it beautifully. We will work up to 3 times a week, 4-hour sessions to be on the same schedule as Trail. Staying here for now makes that very convenient!

“PD is officially done and he will have that catheter removed probably one day next week . One step closer to home . . . The ride is a crazy one , so thanks for staying on it !! We love you all.”

When Zach and his mother return to Robson, his care will be in the hands of the staff at Trail’s Kootenay Boundary Regional Hospital while he waits for a kidney transplant. All that’s needed is 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


This piece right here, from npr.org, is terrific. There is a 35-minute clip that you are able to listen to, or you can read a short story that features a few excerpts from that interview. . . . It is with Dr. Joshua Mezrich, who is an associate professor in the division of multi organ transplantation at the U of Wisconsin School of Medicine and Public Health in Madison. . . . He has been involved in hundreds of kidney, liver and pancreas transplants, and talks about his experiences and a whole lot more right here. . . . These transplant surgeons really are special people. I know that I really enjoyed the conversations I had with Dr. Brian Mayson at St. Paul’s Hospital in Vancouver, before and after Dorothy’s transplant more than six years ago. He always made you feel as though he had all the time in the world to converse with you, and that is something that we really appreciated.


Checking on Ferris Backmeyer and Zach Tremblay, two young people dealing with kidney disease . . .

It’s time to check in with a couple of our favourite young people — Ferris Backmeyer and Zach Tremblay — each of whom is dealing with kidney disease and is in need of a transplant.

Both are regular visitors to B.C. Children’s Hospital. Ferris and her mother, Lindsey, have just returned to Kamloops from their most recent trip, while Zach and Jana have been in Vancouver for a few days now, and are likely to remain there for a while yet.

Lindsey and Jana both took to Facebook on Wednesday to update friends as to the latest happenings. Hopefully, these will provide some insight into what people have to deal with they as they and/or their loved ones deal with kidney disease.

——

Ferris, who is about to celebrate her third birthday, does peritoneal dialysis on a daily

FerrisJan2020
Ferris Backmeyer, soon to be three years of age, loves nothing more than to spend time drawing and smiling. (Photo: Lindsey Backmeyer/Facebook)

basis. She needs to gain weight, and maintain that weight, in order to have a transplant.

Here is a bit of what Lindsey posted:

“The take home from this trip is that she’s been managing pretty well from a dialysis perspective. Things are going well and our focus yet again seemed to be on growth . . . We have our wrapup from the assessment meeting with the transplant nephrologist Feb. 7. Our dialysis team is hopeful she will be ready to list/look into live donors by March.

“For the past few months we have seen audiology and ent each time we go down. Ferris’s hearing tests are abnormal. This took me by surprise as I’m fairly certain she can hear some stuff. She follows instructions and has conversations with us daily. However, I am starting to think that she likely can’t hear as well as we think and it’s likely why she isn’t speaking yet. And I mean no clear words . . . except no . . . and yah. She’s also increasingly frustrated that we don’t know what she’s saying (as she’s most definitely trying to talk) although learning some basic signs has helped with this.

“Anyway, they are taking it quite seriously and have put her on an emergent list and I’ve been told we will be back down likely within the next month for a hearing test done under general anesthetic and probable placement of tubes. After that, they will discuss whether she will need hearing aids. I’m hopeful that this might help her in the communication realm as we all know she is sooooo smart!

“She loves to draw and is practising her smiley faces. Her imaginative play is so incredible to watch. She will pretend her baby is hurt, sign for sad and then pull an imaginary Bandaid out of thin air and pretend to put it on, then say happy! She loves to dance and her favourite songs right now are ‘Me Too’ by Meghan Trainor and Dance Monkey.

“In just a couple short weeks, little miss will be 3 and I can’t wait to see how she grows!”

——

Lindsey ended her latest post with this:

“We also got to meet my friend Jana (Tremblay) and her kidney friggin warrior Zach!! Was by far the best part of this trip for me!! It was so nice to chat with people who are dealing with something similar to us! I hope to meet up with them again sometime soon, and hope even more that Zach gets the kidney he so desperately needs!!”

It is tremendous news that Lindsey and Jana finally met and you can bet that they will continue to communicate with each other. This kind of support is invaluable and is the reason why we started the Kamloops Kidney Support Group. Words can’t express the importance of being able to meet and talk with people who can relate to what you have dealt with and are going through.

(BTW, the KKSG’s next meetings are Feb. 8 and 12; we meet on the the second Saturday (9 a.m.) and Wednesday (10 a.m.) of each month.

——

Jana and Zach, who are from Robson, B.C., remain at B.C. Children’s Hospital as Zach, 16, is transitioned from peritoneal dialysis to hemo. On Wednesday, Jana posted:

“We have had a few big changes and a few tough days. Our boy is a rock star though, as always, and seems to be handling these things with courage and more grace than most adults would.

“Peritoneal dialysis is no longer working for Zach. On Friday, he had surgery to have a hemo catheter placed, and we will be transitioning over to hemo dialysis permanently until we can find his match.

“We have no time frame on coming home atm. We are just working to get him successfully running hemo, and to be a healthier him.

“I don’t have many more answers than that at the moment .

“Please keep him in your thoughts and prayers as we make this leap into the adult world of dialysis. We can’t move here for him to have treatment 3x per week, and the local dialysis unit in Trail is not connected to Children’s in any way, so our dialysis time here, and with our team, will come to an en . . . Bittersweet, but life.

“Please keep sharing his story in hopes it reaches the right set of eyes!”

——

If you would like more info on being a living kidney donor:

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 Ministry of Health is seeking a contractor to build an organ and tissue donation registry, and it’s leaving its options open in case the province later adopts an opt-out donation model,” Arthur White-Crummey of the Regina Leader-Post wrote earlier this month. “Health Minister Jim Reiter revealed the government’s plans for an online registry in March of last year, signalling that the system should be up and running by the end of the fiscal year in April.

“The plan is now moving forward after a slight delay. The Ministry of Health posted tender documents Thursday seeking proposals to build the system. It is now hoping for the registry to be available to the public, “ideally,” by mid-June of this year.”

The complete story is right here.





Yukon politicians need to do better with dialysis file . . . More on Zach Tremblay . . . Fraser Valley hotdog king makes great decision

Allow me to throw a few words in the direction of politicians in the Yukon: Chronic Kidney Disease (CKD) isn’t going away. In fact, as time goes on medical advancements are going to mean more diagnoses, meaning CKD is only going to take a bigger and bigger bite out of your population, as it is everywhere else. . . . In the medical community, it is generally accepted that one in 10 Canadians is living with kidney disease or is at risk, and most of those people are unaware of their situation. . . . I would suggest that Yukon isn’t a statistical anomaly, so I also would suggest that the fact there isn’t a community dialysis unit in your area of our country is something of an embarrassing tragedy. . . .

If you are a regular here, you will be aware that Terry Coventry, 74, died in Whitehorse General Hospital on Jan. 3. He had kidney disease and was doing hemodialysis in Vancouver until, plagued by loneliness, he chose to return home even though he knew he was facing certain death.

He invited media to visit with him in hospital in Whitehorse on Dec. 10, telling them: “I’m not afraid (of dying). I’m just kind of pissed off that there’s nothing they can do for me . . . I sure hope it’ll help the next person, you know? For whatever reason, we should have a dialysis here at the hospital. We don’t.”

Jackie Hong of Yukon News has reported that Coventry’s sister, Kelly, is picking up the torch that her brother had been carrying.

“Terry has gone peacefully and the way that he wanted to, and that gives me a great deal of joy,” Kelly told Hong earlier this week. “It also gives me a great deal of joy knowing we were able to kind of tick all of the boxes that he wanted to get accomplished before his passing, and the only thing left is getting a hemodialysis machine here in the Yukon. . . .

“The success is going to have a hemodialysis machine here in the Yukon so that people don’t have to experience what he experienced and when that happens, and I say when, not if . . .  then Terry’s last wish will be completed.

“Hopefully things will move quickly once everything is settled and I can sort of get the push on again.”

Here’s hoping that there are politicians in the north country who are paying attention and prepared to make a difference.

Hong’s complete story is right here.


Zach Tremblay and his mother, Jana, finally got to Vancouver on Monday. You will recall that they are from Robson, B.C., and that Zach, 16, is in need of a kidney transplant. Late last week, he began having some issues and the decision was made to get him to

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Zach Tremblay is 16 now, and he still needs a kidney. The phone numbers will get you to the Live Donor Exchange Program at St. Paul’s Hospital in Vancouver.

Vancouver so his medical team could take a look.

Just to complete the story that began then. . . .

Unable to fly out of Trail, B.C., due to inclement weather in various locations, Zach and Jana ended up making the trip to Kelowna via ground ambulance. Jana posted late Sunday night/early Monday morning:

“Kelowna — safe and sound — BUT, and that’s a mighty big butt, there’s nothing nice to be said about travelling facing backwards and not being able to see where we were going. 🤢

“Settled in for the night , and onward to Van tomorrow

“We truly love you all.”

——

On Monday morning, she posted:

“We are still in Kelowna. We woke to a huge snow storm and I don’t think planes are moving right now. His BP was pretty stable overnight and he’s resting well . . . no idea when we will get to Van but eventually we will.

“Thanks for staying on this crazy ride.

“Love to you all.”

——

Later Monday, she wrote:

“We have FINALLY arrived in Van — no real updates — he’s getting the care he needs and we are where we need to be for now.

“We thank you all for the love and support and for just loving our boy and our family.

“#TeamZach is one of a kind of and we are blessed to have each and every one of you a part of it.”

——

On Thursday night, Jana told me that Zach’s medical team has decided that peritoneal dialysis “isn’t working well for him anymore and he will be having a hemo catheter placed” on Friday.

Once Zach’s situation stabilizes, he and Jana will return home, after which his care will be placed in the hands of the staff at a hospital in Trail, B.C., which is about 30 km south of Robson.

——

If you are interested in being a living kidney donor, perhaps to help Zach or anyone else in need of a kidney, 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


“Skully White is known around Abbotsford as a charitable guy,” wrote Vikki Hopes of the Abbotsford News. . . . Hopes then went on to chronicle many of White’s contributions to the community and, believe me, there are a lot of them. . . . Now, though, Hopes is taking charity to a whole new level. . . . “He’s donating a kidney to one of his customers, Tim Hiscock,” Hopes wrote. . . . Hopes’ story of how this all came about is right here.




A mother’s love, courage needed to deal with son’s illness . . . Calgary MP continues to push organ donor bill

ZachIt takes a whole lot of courage to deal with kidney disease on a daily basis while doing dialysis, either peritoneal or hemo, and waiting and hoping for a phone call telling you that a match has been found and, yes, it’s your turn.

I can’t imagine what it must be like when the person with kidney disease is your child.

Consider the situation in which Jana Tremblay of Robson, B.C., finds herself as she waits and hopes and searches for a kidney for her son, Zach, who is 16 years of age.

As has been detailed here on previous occasions, Zach has experienced one failed transplant and now, on top of everything else, has anti-body issues that make finding a match a bit more difficult. And then, this weekend, there were more issues.

On Saturday morning, Jana wrote:

“Because life just likes to keep us on our toes, we are currently sitting in Trail Hospital, awaiting air transport to Vancouver. Zach has very high BP, and needs some TLC from his team.

“And just to throw an extra kink into things, weather in Van and Kelowna has our flight on hold . . . that’s a switch. 😜

Keep good thoughts for our boy.”

——

On Sunday morning, Jana greeted us with:

“Mornin’! We are still in Trail, awaiting transport or an update from them . . . gotta love winter in BC.”

——

Later Sunday came this:

“Captain’s log — Day3

“We are still in Trail — no big enough windows for us to move (Sunday). Today’s delays brought to you by Mama Nature and winter in the Koots!

“BP is slowly coming down, and he’s a little more like our boy.

“Backup plan for (Monday) is ambulance to Kelowna and hopefully fly from there.

“Join Team Zach and we can promise you it’s never a dull moment!!

“Much love and thanks to you all, for loving and supporting us the way you all do — indescribable and amazing.”

——

Then, just before 10 p.m., Jana wrote:

“And JUST like that things change. We are currently on our way to Kelowna via ambulance. Hopefully fly from there tomorrow fingers crossed.”

——

There really is nothing like a mother’s love, and the courage they show in times like this is off the charts. . . . Now if only Jana’s phone would ring . . .


When the Canadian government begins to debate private members’ business late next month, the first bill on the agenda will deal with organ donation. . . . Len Webber, a Conservative Member of Parliament from Calgary, won a lottery that gives him the first slot in that debate. He will use the time to revive a bill that that came close to becoming law in 2019. . . . “Webber’s office cites research that suggests that while 90 per cent of Canadians say they support organ donation,” writes Janyce McGregor of CBC News, “only about one in four or five Canadians (has) signed up with their provincial or territorial registries. Without more donors — including donors from diverse ethnic groups — patients die before transplant matches become available. Webber’s bill would make it easier to register by adding the option to the bottom of the federal tax return, similar to the question there now that seeks consent to update Elections Canada’s voters list with the tax filer’s current address.” . . . The bill actually was passed in Parliament late in 2018, but wasn’t able to get through the Senate before the 2019 federal election. . . . “The bill is about giving people who require a life-saving organ a second chance and this drawing has given my bill a second chance of life, too,” Webber told McGregor. “I believe that there’s a God up there, and even more so now.” . . . McGregor’s complete story, including why Webber is so committed to his bill, is right here.


Robin Warshaw of nextavenue.org has written an interesting piece that is headlined: You’re Never Too Old To Be An Organ Donor. . . . That piece is right here.

Zach’s search for kidney continues . . . Coventry hoped his death will bring change to Yukon

Gord McIntyre of Postmedia chatted with Jana Tremblay the other day and the result — a story on Jana’s son Zach — was in Vancouver’s two daily papers on Friday. . . . The hunt is on for a kidney for Zach, 16, who spends 14 hours a day undergoing dialysis. The Tremblays live in Robson, B.C., just across the Columbia River from Castlegar. . . . McIntyre’s story is right here.

I first wrote about Zach in October. That piece is right here.

NOTE: Just as I posted this on Saturday morning, Jana Tremblay was putting a note on Facebook . . .

“Because life just likes to keep us on our toes, we are currently sitting in Trail Hospital, awaiting air transport to Vancouver. Zach has very high BP , and needs some TLC from his team.
And just to throw an extra kink into things , weather in Van has our flight on hold … that’s a switch 😜
Keep good thoughts for our boy.”

We’re thinking about you, Zach.


Terry Coventry lived in Whitehorse for 61 years; he died of kidney failure in Whitehorse on Friday at the age of 74. . . . Coventry died four weeks after a final dialysis treatment. . . . He had ended up at St. Paul’s Hospital in Vancouver in July and spent four months there. With dialysis treatment unavailable in Whitehorse and not wanting to relocate to Vancouver, Coventry returned to the Yukon city to die.

On Dec. 10, Coventry called reporters to his bedside in Whitehorse General Hospital. “Maybe my death, and my complaint here, will trigger something in the government so the next guy coming along can be here and won’t be shipped down south,” Coventry told reporters. “I’m going to die. That’s it . . . I’m not afraid, I’m just kind of pissed off.”

Steve Silva of CBC News has more right here.

Gabrielle Pivonka of the Whitehorse Star was among the reporters at Coventry’s bedside on Dec. 10. Her story, which is right here, helps to explain why hemo-dialysis isn’t available in Whitehorse.


Those involved with The Kidney Project feel that they are moving ever closer to eliminating the need for dialysis. . . . The team reported in November that U of California — San Francisco “scientists have successfully implanted a prototype kidney bioreactor containing functional human kidney cells into pigs without significant safety concerns. The device, which is about the size of a deck of cards, did not trigger an immune reaction or cause blood clots in the animals, an important milestone on the road to future human trials.” . . . Team member Shuvo Roy, PhD, said in a news release: “This is the first demonstration that kidney cells can be implanted successfully in a large animal without immunosuppression and remain healthy enough to perform their function. This is a key milestone for us. . . . Based on these results, we can now focus on scaling up the bioreactor and combining it with the blood filtration component of the artificial kidney.” . . . The complete news release is right here.