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

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.

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.




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.

Kara-20170413
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.

——

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.)

——

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.”

——

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

Meet Zach Tremblay, an active teenager from Robson, B.C., who needs a kidney . . .

By day, Zach Tremblay is your typical 16-year-old.

He is a Grade 11 student at Stanley Humphries Secondary School in Castlegar, B.C., just across the Columbia River from his family’s home in Robson in the West Kootenays. He plays basketball and likes to bowl. He spends time skateboarding, and hanging with buddies.

By night, however, Zach is anything but typical.

As he gets ready for bed every night — every single night . . . EVERY SINGLE NIGHT . . .

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.

there aren’t any nights off — he hooks up to a machine called a ‘cycler’ that, while he is sleeping, uses fluids to drain toxins from his body. For most of us, our kidneys take care of these toxins.

However, Zach was diagnosed with chronic kidney disease at birth. While he was younger, medications helped control things. As he grew older, the medications weren’t enough. He now has been doing peritoneal dialysis (PD) for almost five years.

There was a brief interruption in the middle of 2017 when he underwent a live donor transplant at B.C. Children’s Hospital in Vancouver.

But, as his mother, Jana, wrote, “Unfortunately it did not work out, and was removed 24 hours and four surgeries later. An absolutely heartbreaking moment for all of us, but mostly him.”

On Sunday, Jana told me that “because of the donor tissue being inside him, he has developed very high antibodies, so finding his match has proven to be a huge challenge.”

After the transplant didn’t work out, it was back home. Back on PD. Back waiting and hoping for a live donor to be found.

In September 2017, about three months after the transplant had failed, Jana took to her Facebook page in an attempt to add some momentum to the search.

“Zachary Tremblay is a 14-year-old boy from Robson, B.C., Canada,” she wrote. “He was born with CKD, Hypoplasia-Dysplasia with reflux. After 12 long years of battle, he has been put on PD and is awaiting a kidney transplant. Zachary is an O negative, but the donor can be O, O- or O+– The RH Factor is irrelevant, and can be controlled by meds.

Each family member has been tested with no matches. We are now reaching out to you, the public, our friends, families, neighbours and strangers. Our boy needs a kidney, and every kid deserves a chance at a healthy life. Please consider being tested for him.”

Four months ago, Jana updated the situation for the first time in six months:

“Six long months have passed since our last update. Six more long months of dialysis, meds, appts, lab draws, injections, supply orders and dump runs ( medical waste builds up SO fast!)

“We are still sharing, waiting, hoping and praying our boy gets his gift. We will never give up on that! In the meantime, we promote organ donation and ensure people who want to be are signed up.”

Last summer, Jana was asked to address the gathering at the annual Kidney Walk in Trail, B.C. Her father was ill, so she wasn’t able to make it, but she put together an emotional piece that was read to the crowd that day. More than anything, this spells out the impact that kidney disease has on a family. Some excerpts follow . . .

Shortly after birth, doctors discovered that Zach “was in complete renal failure and would need immediate intervention at B.C. Children’s Hospital if he was to have any chance at survival. . . .

“Zach, myself and his Dad spent the next six weeks in hospital. We slept side-by-side on an old metal cot beside his crib, in the corner of his room, so we could be there no matter what happened.

“He had very high potassium, and they were worried his heart would be damaged or, worse, would just stop.

“Many long nights, painful tests, blood draws, treatments, ultra sounds, and IV’s later, our baby was stable, and we were able to bring him home. I remember excitedly asking our doctor, ‘What now? What do we do now? What will happen to him and where do we go from here.’ His response shook me to my core. He very quietly and calmly said: ‘Take him home and enjoy him, because this baby is not going to live.’ . . .

“Not only did our son survive, he surpassed any expectation they had for him. He grew and thrived and required very little intervention, aside from vitamins and phosphate binders, until his 11th year.

In September 2012, he went into sudden decline, and by December he required surgery to place a peritoneal dialysis catheter (into his peritoneal cavity). After the holidays and some healing, we spent the next two weeks training in Vancouver to learn to give our son dialysis at home. We had to learn to look after our son, and give him his therapy, distribute his meds, care for his site, and watch for signs of issues or infection. . . .

“We have spent the past 15 years traveling back and forth to Vancouver. While people were setting money aside for their next family holiday or big vacation, we were saving for our next trip to Vancouver. . . .

“This disease affects the whole family. My other son, Mason, has spent a good deal of his life, also going back and forth, attending appointments and supporting his brother. He has been afraid, lonely, scared and angry. . . .

“There are few people in this world I look up to more than my kids. Zach has endured more than any kid should have to. He has handled it with a maturity and grace not seen in most his age. While most kids are worrying about homework, social media, friends, etc., he has all that, plus the added pressure of this disease. He has to remember to take meds. He has to take his BP everyday. He has worries, fears and responsibilities most adults couldn’t adhere to. He shouldn’t have to.”

The Tremblay family, including Jana and her husband, Dan, live in Robson. There is an older brother, Taylor, and an older sister, Kailie, both of whom have partners and children. There are other family members in the area and in the Okanagan; the support system, Jana said, is strong.

The family has learned to take life one day at a time as they wait. Hoping. Praying. Zach hooks up to his cycler EVERY SINGLE NIGHT as he, too, plays a waiting game.

On Thursday, Jana posted a brief message on Facebook. It read: “Thursday seems like a great day to find a kidney!”

I’m thinking that the Tuesday after a Thanksgiving weekend would be a great day to find a kidney, too.

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If you are interested in more contact 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