A wife’s plea: ‘We are reaching out to everyone in dire-desperation to find a living donor for Vic’

Vic2Are you ready for some numbers?

You are. Great.

For starters, take a guess at how many people in B.C. were waiting (and hoping) for a kidney transplant as of July 31.

According to BC Transplant, there were 633 B.C. residents in that situation.

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Vic Morin of Kamloops is one of them.

His wife, Colleen Bruce, told Vic’s story a year ago. Earlier this week, she provided an update:

“It now has been close to one year since my last posting on Vic and his struggles with kidney disease. There have been a lot of changes in our lives over the past year.

“Vic was put on emergency hemodialysis in the middle of September 2019.  Vic now has transitioned to full-time peritoneal dialysis that he does at home eight hours a night, seven days a week. This dialysis is done at night while he is sleeping.

“Over the past year his health has unfortunately declined. He doesn’t have the energy to do much anymore due to the kidney disease. Even going for walks is a big struggle, but he does try his best a few times a week.

“We really were hoping that the dialysis would give him more spark and energy, but because the kidneys are so diseased, this isn’t the case. He needs a kidney now more then ever.

“We had a virtual appointment with our doctor from St. Paul’s Hospital in early August. He said Vic’s wait for a kidney from a deceased donor could be up to four years for his blood type. As well, the doctor wasn’t sure that Vic’s arteries that attach to the kidney would be strong enough for a kidney transplant in four years.

“The doctor told us that Vic’s only option now is to receive a kidney transplant from a living donor within a year.

“So once again we are reaching out to everyone in dire-desperation to find a living donor for Vic. We created the accompanying poster in hopes of reaching as many people as we can.

“Please keep in mind that you don’t need to be an exact blood-type match to become a donor for Vic, as St. Paul’s Hospital has a paired exchange program. This means that the donor and Vic (recipient) will enter into the paired exchange program.

“Here is how it works:

“Donor A wishes to donate a kidney to Recipient A, but they are not a match. Donor B would like to donate a kidney to Recipient B, but they are not a match. However, Donor A is a match with Recipient B and Donor B is a match with Recipient A. A paired exchange can then be completed.

“Again, we are needing to get our story out to as many people as will listen. If you have ever considered becoming a kidney donor, or would like more information, please contact the donor nurse co-ordinator at St.  Paul’s Hospital by calling 604-806-9027 (1-877-922-9822) or by emailing donornurse@providencehealth.bc.ca. Please mention Louis Victor Morin.”

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More numbers, thanks to BC Transplant . . .

As of July 31, there had been 133 kidney transplants conducted in the province — 89 involving deceased donors, 44 from living donors.

All told, BC Transplant was following 3,540 post-transplant patients.

In the Thompson-Cariboo-Shuswap area, which includes Kamloops, there were 1,217 people with chronic kidney disease. . . . There were 71 people from that area on the transplant list. . . . All told, there were 78 people doing hemodialysis, with another 31 doing peritoneal dialysis.

Think about all the numbers for a moment and you will realize that kidney disease isn’t going anywhere.

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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

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Vancouver General Hospital Living Donor Program – Kidney 

Gordon and Leslie Diamond Health Care Centre

Level 5, 2775 Laurel Street

Vancouver, BC V5Z 1M9

604-875-5182 or 1-855-875-5182

kidneydonornurse@vch.ca

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Or, for more information, visit right here.

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

Christmas2019
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

DandK-20180922
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.

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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

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

Kamloops family given OK to search for kidney donor for daughter . . . Ferris Backmeyer, at 2-1/2, in need of transplant

Faceoff2
Ferris Backmeyer joined her father, Pat, along with Dorothy Drinnan (left) and Margaret Thompson for the ceremonial faceoff at a Kamloops Blazers game on Feb. 1. (Photo: Allen Douglas/Kamloops This Week)

If you were in attendance on Feb. 1 as the Kamloops Blazers played host to the Prince George Cougars, you may have seen Ferris Backmeyer at centre ice.

Ferris took part in the ceremonial face-off prior to what was the second annual RE/MAX Presents: WHL Suits Up with Don Cherry to Promote Organ Donation game.

Ferris and her father, Patrick, were at centre ice, along with Dorothy Drinnan and Margaret Thompson, two women who have grown to be close friends since both have had kidney transplants.

Ferris and her family are hopeful that she soon will join that club, too.

Yes, Ferris, who is 2-1/2 years of age, needs a kidney, and her mother, Lindsey, has turned to Facebook to announce that the search for a donor officially is underway. In other words, potential donors now are able to contact the Living Kidney Donor Program at St. Paul’s Hospital in Vancouver

Ferris
Ferris Backmeyer, at 2-1/2 years of age, is in need of a kidney transplant. (Photo: Lindsey Backmeyer/Facebook)

First, though, you should get to know Ferris, who made quite an impression when she and her father joined us a while back for a gathering of the Kamloops Kidney Support Group.

Michael Potestio of Kamloops This Week wrote about Ferris in April 2018.

“A few weeks after she was born,” Potestio wrote, “Ferris, now 14 months old, was informally diagnosed with Mainzer-Saldino syndrome, a disorder characterized by kidney disease, vision loss and misshapen bones.

“The disease is caused by gene mutations and is so rare there are only about 20 known cases, according to the U.S. National Library of Medicine.
“After she was born, Ferris wasn’t gaining weight and subsequent blood work showed abnormalities with her kidneys and liver.”

At that time, Lindsey told Potestio:

“The scariest part in the first few weeks was we didn’t know what was going on. And she was admitted to (B.C.) Children’s Hospital back when she was three weeks old and nobody really knew what was going on.

“It’s a bit disconcerting when the medical professionals can’t give you a diagnosis for your kid.”

Genetic testing later confirmed the diagnosis, and it wasn’t long before Ferris’s kidneys failed.

The Backmeyers, who also have two older daughters, have spent a lot of time at BCCH in Vancouver with Ferris, especially in the early days of kidney failure as medical staff got her started on dialysis. She has been doing peritoneal dialysis (PD) and it took a lot of testing to see just how much of the dialysis fluid her body comfortably could hold. Ferris now has been doing PD at home for 18 months.

In PD, the patient is hooked up to a cycler every night — yes, seven nights a week — and fluids are used to absorb and drain toxins from the body via a catheter that is implanted in the peritoneal cavity. The patient carries fluid all day in that cavity, then repeats the draining process nightly.

Ferris has struggled to gain weight, which has complicated her situation. She needs to get to 10 kilograms before a transplant can take place.

But now it seems that she is making progress in that area.

Lindsey recently posted this on Facebook:

“We just got back from B.C. Children’s Hospital from one of our biggest trips ever and it was the first time I didn’t have (husband) Pat with me the whole time and first solo trip back with a 2 year old that doesn’t nap!

“She let them do all the things and the only tears we saw were with labs. She had the patience of a saint and literally seemed to be handling things better than I was. Hours of different consultations, 2 sets of labs, a bunch of X-rays, a dentist appointment and a hearing test!

“The initial screening for kidney transplant has officially begun!

“Little miss remains on the lowest side for weight and height that they will transplant, and growth has slowed again considerably. Praying for more growth!

“As for the donor part of things, we have been given the go-ahead to have any interested donors contact the St. Paul’s living donor program at 604-806-9027, citing Ferris as the intended donor.

“Her blood type is ‘B’ but they encourage all interested donors to contact St. Paul’s directly. They then mail out a package.

“Ferris’s side of the process is completely separate from the donor side and the donor side is 100 per cent up to the donor. We have been told the donor process can take just as long as the transplant workup for Ferris, so starting the search now is recommended.

“I am sharing this publicly because I want to get the word out. She deserves to live a healthy life and we are sooo ready to move on to the next phase. Social media has proven to be successful and altruistic donors is totally a thing! So let’s do it!! Let’s find Ferris a kidney!!”

Understand that you don’t have to be a match in order to help Ferris get a kidney. If you aren’t a match, the Living Donor Paired Exchange program will be used to match you with another donor/recipient pair in a similar situation.

The age and size of a donor isn’t a big deal, either. What is important is the health of the donor and his/her kidneys.

There is more information available right here at Providence Health Care’s website.

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