Kidney Mom: Your supposed loss of freedom is NOT worth more than my son’s life . . . or anyone’s for that matter!!! It’s just NOT.


Jana Tremblay, a Kidney Mom from Robson B.C., posted this on Facebook recently:

JanaZach
Jana Tremblay and her son, Zach. (Photo: Jana Tremblay/Facebook)

“My heart is heavy these days . . . watching people cry ‘freedom’ over stopping the spread of this virus, and protecting our vulnerable is getting really tough to take. It’s a small kick to my heart every time I read it. PTSD flashbacks of watching him on life support flash in my brain. It’s hurtful and selfish.
“Your supposed loss of freedom is NOT worth more than my son’s life . . . or anyone’s for that matter!!! It’s just NOT.”

Four sentences and you can feel Jana’s frustration bursting from each of them.

Her teenage son, Zach, is in need of a kidney transplant, and has been for a while now. These days, he travels three times a week from Robson to Trail in order to undergo hemodialysis.

You have no idea how many people just like Zach are walking among us. You have no idea how many recipients of organ transplants are walking among us. You have no idea how many other people with medical issues are walking among us.

Most of them also will have compromised immune systems, meaning they are at high risk of contracting COVID-19, be it Delta, Omicron or some other incoming variant.

And, if you are vaccine-hesitant or an anti-vaxxer, let me tell you something else — while you haven’t yet showed up for your first vaccination, some people are getting No. 4.

A kidney transplant friend in Edmonton got No. 4 on Feb. 2. My wife, Dorothy, is waiting and hoping that she soon will get No. 4.

So, please, do the right thing and get vaccinated.


BTW, if you are vaccine-hesitant or an out-and-out anti-vaxxer, you should know that, as Amanda Connolly of Global News reported, “there appears to be growing consensus among Canadian organ transplant specialists about requiring COVID-19 vaccinations for patients looking to be placed on the wait-list for an organ donation.”

In fact, the Canadian Society of Transplantation has updated its guidance and now is prompting “any provincial and regional programs to be transparent if they choose to implement the rule.”

That complete story is right here.

——

Meanwhile, Chad Carswell of Hickory, N.C., won’t be getting the kidney transplant that he needs because he refuses to get vaccinated. “I was born free; I’ll die free,” he told The Washington Post. . . . Carswell, 38, has been doing hemo-dialysis since July 2020. . . . Atrium Health Wake Forest Baptist Hospital has a policy that recipients and donors must be fully vaccinated. Transplant patients are at high risk for severe illness from COVID-19. They take anti-rejection medications that result in compromised immune systems. . . . The hospital told The Post in a statement that its policy“follows the current standard of care in the United States, which is to vaccinate all patients on waiting lists or being evaluated for transplant. We understand that some patients may not wish to be vaccinated. In this case, patients can opt to be evaluated at another transplant center.” . . . Carswell, who has had both of his legs amputated due to complications from diabetes, said he has had COVID on two occasions. . . . Why won’t he get vaccinated? The Post reported right here that Carswell “does not believe in conspiracy theories about the vaccines, but remains skeptical about how they were developed.” . . .

Carswell told The Post: “There is not a situation in this world that I’ll get a vaccine. If I’m laying on my deathbed, and they tell me, ‘You have a kidney waiting on you if you get this shot,’ I’ll tell them ‘I’ll see you on the other side.’ ” . . . The Associated Press reported in January that according to the family of D.J. Ferguson, a Massachusetts hospital had denied him a heart transplant because he refused to get vaccinated. And there have been reports that the same thing happened to a woman in Colorado who needs a kidney.



Wilbert Mora, a 27-year-old New York City Police officer, died after a shootout in Harlem on Jan. 21. His family, upon hearing of his death, immediately gave  permission for organ transplantation. His heart, liver, kidneys and pancreas went to five different people. There is more on that story right here.





If you are interested in being a living kidney donor, more information is available here:

Living Kidney Donor Program

St. Paul’s Hospital

6A Providence Building

1081 Burrard Street

Vancouver, BC V6Z 1Y6

Tel: 604-806-9027

Toll free: 1-877-922-9822

Fax: 604-806-9873

Email: donornurse@providencehealth.bc.ca

——

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

——

Or, for more information, visit right here.


Want an easy win to feel great? Register to be an organ donor today. It will only #TakeTwoMinutes and you could save a life. Great deed and fuzzy feels without any hassle. #Register2Give taketwominutes.ca

Teenage transplant hopeful named COTS ambassador for 2022 . . . Robson, B.C., resident waits, hopes for new kidney

The Children’s Organ Transplant Society of BC has named Zach Tremblay of Robson, B.C., as its 2022 Ambassador.

Zach, a graduate of Stanley Humphries Secondary in Castlegar, will turn 19 in March and is a candidate for a kidney transplant. Born with renal hypoplasia-dysplasia, he has had one transplant, on June 1, 2017, but there was a problem and the ‘new’ kidney had to be removed.

Two years ago, his mother, Jana, told Gord McIntyre of Postmedia what had happened:

“What should have been a fairly routine four-hour surgery lasted about eight hours. They finally came and found my husband and me to tell us that a technical error had been made during the surgery and it cut off the blood flow to the kidney.”

McIntyre added: “Two more surgeries were performed overnight trying to save the kidney. When a test the next morning showed the kidney was not functioning, Zach required a fourth operation within 24 hours to remove the failed organ.”

He has made the transition from peritoneal dialysis to hemodialysis, but that has meant travelling to Trail three times a week because there isn’t a facility in Castlegar. At one point, early in 2020, he and Jana were forced to live at Ronald McDonald House in Vancouver for a period of time so that Zach could do hemodialysis there, while he waited to turn 17. He had to be 17 in order for the hospital in Trail to take over his treatments.

What all of this means, of course, is that Zach is well-positioned for this new position as the 2022 Ambassador for COTS. Not only that, but he already has had an impact in the world of organ donation.

Here’s a note that Joan Alexander, a friend of Jana’s, posted on Facebook on Jan. 18:

“Several years ago, on this day, I became an NDD (non-directed kidney donor). Zach got me started on my journey and, although I was not a match for him, I was able to donate to someone else. I am well, healthy and would donate again if I could.

“As an active volunteer for The Kidney Foundation of Canada, Atlantic Branch PEI, I advocate and raise funds for donors and recipients.

“Look at Zach now! He is the 2022 Ambassador of the Children’s Organ Transplant Society! He continues to wait for a miracle and struggles with all of the health implications that long-term dialysis brings.

“Please consider being tested for Zach.”

Zach3









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

——

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

——

Or, for more information, visit right here.


Time is everything. This is why we promise registering as an organ donor should only #TakeTwoMinutes. That’s faster than microwave popcorn! #Register2Give

Zach takes a pill, and another one, and another one and . . . Dorothy on TV . . . Drone delivers for double-lung transplant

ZachMeds

The picture above these words?

Those are the meds that Zach Tremblay, a 17-year-old from Robson, B.C., takes every single week as he waits and hopes for a kidney transplant.

Here’s what his mother, Jana, wrote on Facebook recently:

“This is what it takes for him to stay alive — meds every day x2, plus 4 more pills at meal times! He does dialysis 3x per week, 4-hour runs, has major dietary and fluid restrictions (none of the fun yummy stuff, and 1 litre of fluid, meals included, every 24 hours).

“Please share his poster/story and help us find his match.”

Zachposter2


According to numbers provided by BC Transplant (as of Sept. 30, 2021) . . .

Number of registered organ donors in B.C.: 1,564,489.

Number of organ transplants performed in B.C. in 2021: 383 (189 involving kidneys from deceased donors; 58 involved kidneys from living donors).

Number of patients awaiting transplants: 645.

Number of those needing a kidney: 509.

Number of post-transplant patients being followed: 5,666.

Number of deceased organ donors in 2021: 107.

Number of donor organs imported: 11.

Dylana Kneeshaw of CFJC-TV in Kamloops has more on this year’s organ transplants in B.C. right here.










If you are interested in being a living kidney donor, more information is available here:

Living Kidney Donor Program

St. Paul’s Hospital

6A Providence Building

1081 Burrard Street

Vancouver, BC V6Z 1Y6

Tel: 604-806-9027

Toll free: 1-877-922-9822

Fax: 604-806-9873

Email: donornurse@providencehealth.bc.ca

——

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

——

Or, for more information, visit right here.


Time is everything. This is why we promise registering as an organ donor should only #TakeTwoMinutes. That’s faster than microwave popcorn! #Register2Give

Could you give Zach Tremblay a kidney as graduation present? . . . An emotional mother updates son’s situation . . .

If you are a regular in these parts, you will be familiar with the Backmeyer family of Kamloops and their four-year-old daughter, Ferris, who is in need of a kidney transplant. Her mother, Lindsey, often shares the trials and tribulations of living with a youngster and the challenges presented by a variety of things, including kidney disease.

But what if your child is a teenager trying to make his way through high school? What if your son has to travel to another community three or four times a week for hemodialysis treatments? How do you deal with the fact that your son had one kidney transplant that didn’t work out?

For starters, you hope and pray that he gets another chance.

Zach1
Zach Tremblay, high school graduate.

That, in a nutshell, is what the Tremblay family of Robson, B.C., is going through as their son and brother, Zach, continues his fight with kidney disease.

His mother, Jana, took to Facebook the other day to provide an update on her boy, who graduated from high school last month. And if you don’t think that’s an accomplishment — getting through high school while dealing with kidney disease, a failed transplant and hemodialysis — you need to back up and think again.

Besides the pandemic, this year didn’t get off to a roaring start for Zach when a clot developed in the fistula that had been implanted in one of his arms to help with the dialysis process.

That, Jana explained, “was extremely painful both physically and emotionally for him. It could not be saved and it was a huge blow for us all, but mostly him.

Zach2“It set us all back emotionally, and we decided to just take a step back from it all. Zach then made the decision to stick with his chest catheter and won’t agree to any more surgeries, unless it’s a kidney.”

Those days in the first two or three months of 2021 were wearing.

“He struggled hard with this news and decision and, as a parent, aside from the failed (fistula), it was the hardest thing to watch him go through . . . heartbreaking to say the least,” Jana wrote.

Dealing with kidney disease oftentimes is like riding a rollercoaster. Up . . . down . . . up . . . down. And it’s never easy, especially when you are wanting so badly for there to be a transplant in the near future. And when you’re the mother of a teenager for whom you badly want a kidney, knowing that it would bring him some kind of a ‘normal’ life, well . . . you also watch as your child has to deal with the extra-curricular stuff as well.

“We did our best to push forward and stay positive, but honestly it gets harder and harder,” Jana wrote. “The setbacks are harder to accept, because we feel like he just deserves a break. It’s very hard as an adult to push through and stay positive, but it’s even harder for a kid who faces all of this kidney stuff, plus the social teenage bullshit, and, yes, it’s ABSOLUTE, ignorant bullshit that gets tossed his way as well.”

Zach3Going into March, Zach had always dealt with a medical team at B.C. Children’s Hospital in Vancouver. That all changed with a meeting that month during which they learned that his file was being transferred to “the adult world” at Vancouver General Hospital.

“We were gutted,” Jana wrote, “and I cried and cried . . . 18 years of tears, pain, let downs . . . it all literally poured from my body, and his as well, I’m sure.”

Of course, this transfer meant leaving one comfort zone and moving into an unfamiliar spot and having to start over with new medical people, something that never is easy.

As Jana wrote: “Leaving our team at BCCH is terrifying . . . 18 years of care and trust and faith, and we are leaving empty-handed. It does not feel good.”

But the clouds parted in June, at least for a short time, as Zach graduated from high school in Castlegar.

“Despite many hospital stays over the years, he did it!” Jana wrote. “It was different, of course, with COVID protocols, but our guy made it, and we could not be more proud of him!”

So what’s next for the Tremblays?

Well, Zach and Jana will spend some time in Vancouver next month meeting with the transplant team at VGH “and hopefully push forward towards a transplant for our guy.”

The first half of 2021 wasn’t easy, but, as Jana put it, “we made it, we are here, and so is he.”

And they are determined to focus on the positives and wait to see what “the fresh eyes of a new team will bring” to Zach’s situation.

“We will continue to share his story in hopes of finding a match,” Jana wrote, “and we will continue to advocate for others who are waiting.”

BTW, the Tremblay family all has been “double vaxxed and are super thankful for it!” That’s important for those with kidney disease and compromised immune systems. If you haven’t been vaccinated, please get it done, if not for yourself, for the thousands of people who walk among us with compromised immune systems.







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

——

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

——

Or, for more information, visit right here.

——

Time is everything. This is why we promise registering as an organ donor should only #TakeTwoMinutes. That’s faster than microwave popcorn! #Register2Give

The kidney wait continues for Zach . . . Vic still waiting, too . . . Grand Chief recovering after transplant

Zach16

We all are going to remember 2020 for a lot of different things. You’re right. It wasn’t easy.

But what if your teenage son has kidney disease and needs a transplant? What if he has to travel four times a week to a hospital in another community in order to do hemodialysis for four hours at a time?

Well, here are some thoughts from Jana Tremblay of Robson, B.C., whose son Zach, 17, needs a kidney . . .

“2020 was a crazy year for all of us I think. Covid has certainly made life more challenging, especially for medically fragile people like Zach. We have had to adjust to some changes, but in the end we made it!

“As some may know, 2020 brought dialysis changes for Zach, which then brought two fistula surgeries and some life-scheduling changes as well. Instead of nightly dialysis, he goes to a Trail four times per week, four hours per run. So not fair, but it is what it is for now. Now onto the exciting updates . . .

“His first fistula wasn’t successful, so another attempt was made in August (a little further up his arm) and we are pretty thrilled to say this one has been a success.

“As hard as failure is for you to all hear about, it’s very hard to live through, so we haven’t said much until we knew this one was working. Although there were concerns in the beginning of it possibly not maturing to size, Zach did the exercise and hard work, and it paid off, because his fistula is working well. We are pretty happy to say that he had his maiden voyage a few weeks ago, and three more since, all successful!! Woot, woot!

“They test run each line three times before using both together. He has had three successful runs (not without a few hiccups, but he powered through as usual) on the arterial line. . . . After three successes we transition to both lines, and once we jump that hurdle and he’s using both lines successfully, we can talk about removing his chest catheter, leaving him line free for the first time in six years.”

What exactly does that mean? Well, for Zach, it’s a big, big deal.

As Jana explained: “He will be able to swim in lakes, etc., play basketball like he used to, just lots of bonuses to it. We are SO excited to get to that goal.”

In other words, he’ll be able to be a ‘normal’ teenager in a lot of ways. And I’ll tell you what . . . this courageous young man deserves nothing less.

“But,” his mother added, “for now, we push towards the fistula full time, and keep pushing for a donor.”

Jana knows that it’s all a matter of “the right set of eyes” seeing the photo that accompanies this post and things falling into place afterwards.

When that happens, it will allow the Tremblay to “get past this dialysis stuff and onto life.”

In closing, Jana wrote: “Please continue to share his story, register to be a donor and be kind to your own kidneys.”


Vic2








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

——

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

——

Or, for more information, visit right here.


Time is everything. This is why we promise registering as an organ donor should only #TakeTwoMinutes. That’s faster than microwave popcorn! #Register2Give

Backmeyers looking for rental in Vancouver. Can you help? . . . Gillis remembers good news day . . . Checking in with Julie Dodds

FerrisPat
Ferris and Pat Backmeyer. (Photo: Lindsey Backmeyer)

In what seems like another life a long time ago, Pat Backmeyer entertained hockey fans in Kamloops as Digger, the Blazers’ mascot.

In his real life, he is the father of three young daughters, one of whom, Ferris, had kidney disease. Ferris is three (yes, Ferris, I know you soon will be four) and has been on one form of dialysis or another for a lot of her young life.

Of late, she has been having issues with peritoneal dialysis (PD) and will be heading to Vancouver and B.C. Children’s Hospital early in the new year so that she can be switched over to hemodialysis, at least for a while.

With so much uncertainty and in an attempt to make things easier, Pat and his wife, Lindsey, have decided to set up housekeeping in Vancouver for the foreseeable future.

With that in mind, Pat has turned to Facebook in the hopes of finding a rental accommodation.

“As most of you know,” he wrote, “my daughter Ferris has to go down to Vancouver to have a surgery to repair her abdomen. This unfortunately means switching her over to hemodialysis which is only able to be done at Children’s Hospital.

“So we had to make the decision to move the family down to Vancouver for a minimum of 3 months but could be potentially longer and even a chance of staying until she receives a kidney.

“There are a few places we have seen but the rent in Vancouver for a place that will fit our family is out of our budget. So I am putting a shout out to anyone who might have a friend or know someone who has a place to rent in Vancouver. There will be 5 of us down there. And we need it furnished, and hopefully close as possible to Children’s Hospital.”

This won’t be their first stint at B.C. Children’s Hospital and in the past they have stayed at Ronald McDonald House. But, as Pat pointed out, “Due to COVID they have strict quarantine procedures and due to me commuting back and forth from Kamloops for school it is unfortunately not a option.”

So . . . if you know someone who might have something that would fit the bill for the Backmeyers, contact me at greggdrinnan@gmail.com and I’ll pass along the information.


You may remember Stephen Gillis as the Vancouver minor hockey coach whose team mounted something of a campaign in the hopes of finding a live kidney donor who could help him.

MichaelGillisZach
Stephen Gillis (centre) with Zach Tremblay and his mother, Jana, together on March 11. Stephen’s team had just won a championship that they dedicated to Zach, a 17-year-old from Robson, B.C., who needs a kidney. (Photo: Stephen Gillis)

You also will remember that a friend, Michael Teigen, donated a kidney and that the surgery took place on Feb. 18. But Gillis also remembers one other important date.

Here’s Gillis in a Facebook post on Dec. 11:

“One year ago today, Michael Teigen and Denise Jones showed up to VGH while I was on dialysis to surprise me with our kidney transplant date.

Each day I awaken with endless gratitude for Michael’s selfless and heroic act. My second chance at a full life, COVID aside, has not been taken for granted.

“Almost 10 months post transplant, Michael is doing great and is currently filming another film (his 3rd post transplant), my bloodwork is near perfect and now my follow-ups have moved to every 2 months.

“From the beginning we have shared our story to help others. To raise awareness for organ donation & kidney disease, and to show it isn’t scary to share your health with someone. Rather it is a special gift.

“To all the healthcare professionals that assisted myself and Michael along our journey, THANK YOU. To Michael, endless thank you for eternity, I love you.

Thank you all for your support through it all, it did and still does mean the world.

Be kind. Be safe. Be like Mike.

#beadonor

#organdonation

#organdonorssavelives


Chad Klassen of CFJC-TV in Kamloops caught up with Julie Dodds on Thursday and provides an update right here. Julie underwent a kidney transplant at St. Paul’s Hospital in Vancouver on Oct. 28. The living donor was her younger brother, Jason. . . . Julie was back home in less than four weeks and now is preparing for a Merry Christmas with her husband and their three boys. . . . That story is right here.


Rochelle Corpuz of Kamloops was diagnosed with lupus 16 years ago, two years before she moved here from the Philippines. The autoimmune disease is hard on kidneys and Corpuz’s condition “has worsened and I have to face the reality of kidney failure in the very near future. We are talking months here,” she told Tereza Verenca of castanetkamloops.net. . . . Corpuz, 37, knows that the best scenario for her is to have a kidney transplant from a live donor, and to have that surgery before she is forced to go on dialysis. With that in mind, she has started the search for a living kidney donor. . . . There’s more on her story right here.



Vic2

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

——

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

——

Or, for more information, visit right here.

Zach facing one more speed bump . . . Mom: What we really need is a matching kidney

Zach16

So . . . you’ve got kidney disease . . . you go on dialysis . . . you get a new kidney.

Easy peasy! Right?

Oh, if only it was that easy. If only the process wasn’t so damn heart-breaking in some instances.

Zach Tremblay, a 17-year-old from Robson, B.C., needs a kidney. He has been on dialysis, peritoneal or hemo, since 2014. He had a live donor transplant in 2017 but there were complications and it didn’t work out.

He was doing peritoneal dialysis (PD) at home, but it began to lose its effectiveness as 2019 wound down, and he and his mother, Jana, ended up at B.C. Children’s Hospital in Vancouver where he was transitioned to hemodialysis.

That transition included the removal of a catheter that was used for PD and the insertion of a fistula to make hemo a bit easier by allowing an increase in blood flow.

So much for that.

On Thursday, Jana posted on Facebook:

“I guess to be blunt is best. The fistula surgery failed. We found out on Monday that the fistula has clotted off and did not grow. Fistula surgeries have a 25% failure rate, and he fell into that 25%. We are heartbroken and sad and angry and all the things. But at the end of the day, it doesn’t change that the surgery was a failure. It is unusable as an access for dialysis.

“We aren’t sure when, but another fistula surgery will be scheduled. Please keep sharing his story when you see it.

“A fistula is great, but what we really need is a matching kidney.”

——

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

——

Shortly after Jana’s post hit Facebook, Joan Alexander replied with an emotional plea of her own:

“This is hard to read and even harder to live! Zach’s mom . . . has shared the most recent update on his journey with kidney disease. Zach is the reason I became a living kidney donor.

“I wonder sometimes if people get tired of reading my posts about organ donation. Well, I will not stop until Zach receives his gift! Please take a moment and read more about his journey on Jana’s page or on the public page: Zach Needs a Kidney . . . Like Yesterday!

“Getting tested to become a donor is so easy.”

——

Meanwhile, there was more news from Vancouver where Ferris Backmeyer continues her battle.

Her mother, Lindsey, reported via Facebook that Ferris celebrated something of a birthday . . .

“Well happy half birthday little miss! 3.5 years old . . . oh my!” Lindsey wrote. “Celebrated with a night-time discharge from the hospital and (Thursday) is a day completely free of appointments and dialysis!! She had HD (Wednesday) followed by 3 flushes of her PD cath and a sample was taken late (Wednesday) afternoon. The results came back at 8pm and cell counts continue to improve. Original samples haven’t grown anything so we’ve stopped the IV and oral antifungals. Which meant we could pull the IV and sleep in ‘our own’ beds!!

“Ferris is so happy to have her ‘colouring hand’ back! I’m hoping she will start to feel better as it’s become quite obvious with the IV med anyways that it really makes her feel like crap. Blood pressure has been pretty high lately and I’m fairly certain she’s lost some real weight and is ‘wet’ at 11.3kg. Feeling such a strong need to get back on PD so we can get more calories into her. The fluid restriction on HD makes it so ridiculously tough to grow her. She’s also pretty anemic so hoping once that improves we will see better energy. She seems to be recovering well from surgery and hasn’t had any Tylenol for over 24hrs.

“Plan is to be admitted Tuesday to start using the PD cath. It’ll be a hybrid of HD and PD for a little bit until we can hopefully switch over fully, pull the HD line and come home. Middle of August maybe? That’s the most current plan anyway.”

——

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


Mike




kidney2

Zach recovering after fistula surgery . . . Ferris finds two new friends . . . A kidney recipient says thanks


Zach16Zach Tremblay and his mother, Jana, arrived in Kelowna on Monday evening, and the 17-year-old underwent surgery on Tuesday morning.

He was in recovery later in the afternoon, at which time Jana reported:

“He is alert and awake with some pain.”

Zach and his family live in Robson, B.C., across the Columbia River from Castlegar. He is in need of a kidney transplant — would you consider helping? — and had been doing peritoneal dialysis (PD) on a nightly basis at home. However, it began to lose its effectiveness late in 2019, so he and Jana ended up at B.C. Children’s Hospital in Vancouver early in January and he was transitioned to hemodialysis.

Back home, he has been travelling to Trail, which is about 30 minutes from Robson, for his dialysis runs. After his Monday run, Zach and Jana left for Kelowna.

On Tuesday, doctors inserted a fistula, which will make doing hemodialysis easier, while also removing his PD catheter.

Zach was becoming more alert as Tuesday afternoon wore on, and Jana was hoping that he would be released so that they could spend the night with relatives in Kelowna. Either way, Zach is scheduled for a run this morning (Wednesday) in Kelowna.

“We will see how he’s feeling and decide whether to come home, or stay one more night,” Jana wrote on Facebook.

She closed with: “We sure appreciate each and every one of you loving and supporting our family.”

UPDATE: Zach was released from hospital last night, so he and Jana are overnighting with relatives in Kelowna. He will do a dialysis run this morning at 7:30. If he is feeling well enough after that, they will head for home. Otherwise, they will remain in Kelowna for the day to allow him to rest.


What follows is a note received recently by a kidney donor from the person who has a new lease on life having received that kidney:

“Thinking of you today. Anniversary of my Kidney is here again. A huge thank you for your willingness and your sacrificial donation. You are the angel that just showed up and caused my life to thrive again. Blessings to you!

“I am healthy and things are going well.

“Praying you are doing well. 

“May God’s love and protection surround you and your family.”

Yes, I get a lump in my throat and things get a little dusty when I read things like that because Dorothy and I have driven that same road. There are no words to explain how much that gift of life means.


FerrisFriends
Ferris found two new friends while she and her family explored Granville Island this week. (Photo: Lindsey Backmeyer/Facebook)

Meanwhile, the Backmeyers continues to explore Vancouver’s waterfront between having to get Ferris, 3, to B.C. Children’s Hospital for her dialysis runs.

Ferris, you’ll recall, was doing peritoneal dialysis at home in Kamloops when an infection reared its ugly head and brought all of that to a screeching halt. Her PD catheter was removed because of the infection, and she has been doing hemodialysis for the past couple of weeks.

However, Ferris has had some struggles with hemo, and her mother, Lindsey, reports that “we have a surgery date for a new PD cath and it’s a week sooner than we were originally told.”

That surgery now is scheduled for July 27. If all goes well, Lindsey says Ferris will be admitted on July 26 and “should only be in a couple of days before being outpatient again.

“It’s hard to imagine having to go through this surgery again . . . and the recovery, but at this point I just want to bring her home.”


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


Mike





kidney

Zach still needs kidney, but he’s looking forward to swimming . . . Ferris coming off “rough week” . . . Five numbers of kidney health

Zach16Zach Tremblay, 17, hasn’t been tube-free since he was 11 years of age. That is expected to change on Tuesday.

Zach and his mother, Jana, are scheduled to travel to Kelowna today (Monday), where he is expected to have surgery to install a fistula that will provide easier access for his hemodialysis treatments.

Yes, Zach is waiting and hoping for a kidney transplant; he has been for a few years, as a matter of fact.

He and his family live in Robson, B.C., which is across the Columbia River from Castlegar. Zach had been doing peritoneal dialysis (PD) until it started to lose its effectiveness late last year, and he was transitioned to hemodialysis at B.C. Children’s Hospital in Vancouver earlier this year.

As for Tuesday’s surgery, Jana posted on Facebook that “we know his antibodies are high, so this is the right choice for him while we wait.

“They will also remove his PD catheter at the same time. Once he heals, and he can use it, they will remove his chest cath, and he will be tube-free for the first time since he was 11. That’s a big deal. It’s something he’s been looking forward to for a while, as he will have all the freedoms again of swimming, sports, etc.”

But he still will have to travel from Robson to Trail — it’s about a 30-minute drive — for his hemodialysis runs three or four times a week.

Until the phone call comes to tell him that a kidney has come available.


FerrisGlasses
Ferris Backmeyer showed off her new glasses a couple of weeks ago. (Photo: Lindsey Backmeyer/Facebook)

Meanwhile, the Backmeyers are preparing for another week in Vancouver as Ferris, 3, continues her transition from peritoneal dialysis to hemodialysis after having contracted an infection.

Lindsey and Pat’s other two daughters — Ksenia and Tavia — have joined them from their home in Kamloops, so the good news is that the entire family is together again.

Lindsey reports that Ferris, other than being excited to see her big sisters, had a “rough week overall.”

Lindsey posted on Facebook that “they are really pushing for a lower dry weight and it’s wreaking havoc on her tiny body. I’ve watched her ‘crash’ on dialysis twice this last week and they added an extra day of dialysis so (Saturday) was our fourth day in a row. Her BP now is low and I’m certain it’s the reason she’s having a hard time standing/walking.”

Among the things that hemodialysis does is remove fluid from the patient’s blood. Prior to a run, the dialysis machine is set to a dry weight goal, or the weight objective without excess water. Even when the excess water has been removed, the machine can keep trying to draw out what isn’t there, and that can result in a drop in blood pressure.

Lindsey also reported that Ferris is “eating a ton so we’ve had to adjust feeds to allow her to eat more things! We’ve seen potassium as high as 6.7 also this past week. It’s been scary at times for sure.”

Potassium higher than 6.0 in an adult is considered severe, so 6.7 in a three-year-old isn’t good at all.

“We dropped the amlodipine and the last two days have been marginally better,” Lindsey reported, referring to a drug used to help improve blood flow.

“First days she’s shown any interest in getting in the swing or getting up to play. I’m hopeful we get a better handle this week and start to see more of our sweet girl again.”

What’s it like being the mother of a three-year-old in this situation?

Well, you know that Lindsey has learned a lot about kidneys over the past two years. She also works in the area of critical care at Royal Inland Hospital in Kamloops, so knows something about that end of things, too, including a lot of the terminology. But that doesn’t necessarily make things any easier.

“It’s so hard walking the line of medical mama and healthcare professional,” she admitted in her most-recent posting. “Sometimes not being taken seriously and trying very hard not to be the psychotic protective parent and still advocate strongly for Ferris. It’s trying to put so much faith in people that don’t know her as well as I do. A whole new team essentially with a totally different kiddo. We both are learning her and I just hope that we can get her feeling better sooner than later! “

Through it all, the Backmeyers are working hard to make the best of the situation that has been forced upon them.

They are staying, for now, in Kitsilano, which gives them easy access to the Pacific Ocean.

They had thought this place had been “secured until the end of summer,” Lindsey wrote, “but as of (Sunday) morning we’ve been told otherwise . . . so on the hunt for a sweet place to stay for the month of August! Cost of living down here is insane, but with all the restrictions for families at (Ronald McDonald House) we are hopeful to find someplace private to rent so we can salvage some summer fun.”

In the meantime, Sunday was the family’s “first day off and together . . . should be fun!!”

——

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


Mike




He’s 17 . . . she’s 3 . . . their mothers are sharing experiences . . . now if they could only find kidney donors!

Lindsey Backmeyer lives in Kamloops; Jana Tremblay resides in Robson, B.C., across the Columbia River from Castlegar.

Each has a child in need of a kidney transplant.

Ferrissleep
Ferris wasn’t able to stay awake during a Sunday stroll with her father, Pat, along the oceanfront. (Photo: Lindsey Backmeyer/Facebook)

In Lindsey’s case, it’s her daughter, Ferris, who has kidney disease. Ferris, 3, has been on dialysis since she was 14 months old. She was doing peritoneal dialysis (PD) until a couple of weeks ago when an infection brought an end to that, at least for now, and forced a transition to hemodialysis. They now are in Vancouver and the transition is ongoing, although, if all goes well, a return to PD is in the future.

Jana’s son, Zach, is 17. His time with PD ended early this year when it began to lose its effectiveness. The two of them ended up in Vancouver for about three months as Zach was moved from PD to hemo. Back home, he now makes the half-hour trip to Trail in order to do hemo.

As things have turned out, Ferris’s transition, which admittedly is in its early days, has had some ups and downs. She is being treated as an out-patient, as she lives with her parents, Lindsey and Pat, in a suite in Kitsilano. They take her to B.C. Children’s Hospital four times a week for hemo.

On Monday, Lindsey wrote on Facebook about some of the the trials and tribulations . . .

“Well Saturday morning’s dialysis tuckered her out and I have a feeling we’ve found her ‘dry’ weight. She definitely had more energy Friday than she has the past couple days. Isn’t wanting to be on her feet for more than a few minutes at a time. Wanted to go to the park (Sunday) but only lasted a few minutes before wanting to go back to the ‘brown house.’

“She’s been extra ‘yelly’ which usually tells me she’s just not feeling that great. Still starving and eating constantly while she’s awake. Tolerating all her feeds plus extra.”

Then, Lindsey added:

“She had a crap sleep (Sunday) night ’cause she was itching so much. Her (phosphorous) has been low and urea is being managed much lower than what we saw on PD so I’m not too sure what’s up there. I took the Mepore dressings off her tummy as her skin has reacted badly to it before and she was pulling on them. Hopefully that helps ’cause the one on her chest is not going away . . . and it’s itchy, too.”

This is where things get interesting, because it seems that, despite the age difference, Ferris is experiencing some of the same things that Zach has gone through and continues to experience. That allows Jana to pass on some of her experiences to Lindsey.

Such as . . .

“The dressing change was traumatic for Zach and he’s 17. He said it’s tender for the first few weeks and itchy when they do it does feel a little better. But it’s very anxiety inducting to have them messing with it.”

With Ferris not yet able to clearly express those kinds of feelings, you can bet that Jana’s words have Lindsey at least having a sense of what her daughter is feeling.

“She has been so itchy the last 24 hours,” Lindsey wrote, “and the central line dressing is definitely one of the itchy spots . . .”

Jana responded: “Zach was, too, his first few weeks of hemo . . . maybe the body adjusting. He’s still nervous about it and not a fan, but definitely better than he was.”

Lindsey then added: “The dressing change was awful and I can’t help but think I could just do it myself while she’s asleep and it would have gone so much better. And the dressing would actually have stuck. She was so mad and sweaty, it didn’t stick good at all . . .”

It turns out Jana has seen that show before, too. As she wrote: “Yes, Zach sweats his off, too . . . we always end up taping him up before dressing-change day.”

At the end of the day, the two mothers have a lot in common. But there is one thing above all else . . .

Here’s how Lindsey closed her Monday musings:

“Ummm oh yeah and this girl could really use a kidney . . . just sayin’.”

So could Zach.


Zach16


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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