Kamloops mom hoping transplant is near . . . Donor search for Ferris continues . . . Early stages of CKD? There’s a webinar for you on Sept. 24

Just over a year ago, Julie Dodds of Kamloops turned to Facebook in an attempt to find a living kidney donor. She has Medullary Kidney Disease Type 1, a genetic condition, and had reached Stage 4. . . . The next step is kidney failure and dialysis, and she almost is there these days. . . . This week, Chad Klassen of CFJC-TV in Kamloops updated Julie’s story and, fingers crossed, the married mother of three boys may be getting close to a transplant. . . . It’s also the story of friends, and friends of friends, responding to a call for help. . . . That story is right here.

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Meanwhile, the search for a kidney donor for Ferris Backmeyer, a three-year-old from Kamloops, will continue after Kim DeRose, who spent six months in the testing process, was ruled out. . . . According to her friend Melissa Robinson, who wrote with DeRose’s approval, she was found to have a high level of calcium in a kidney and that was enough for doctors to rule her out. . . . DeRose had read about Ferris’s story, and according to Lindsey Backmeyer, “was inspired to get tested. . . . See if she would be able to give Ferris a better life.” . . .

Robinson wrote on Facebook: “I would like to send a huge shout out to my friend Kimmy. . . . I would like to express how grateful this universe is for people like her.”

Robinson pointed out that DeRose didn’t have any connection to the Backmeyers and is “just a kind heart doing something extremely positive.”

She added: “Positive tests made Kim hopeful that this sweet little girl would get a chance to live her well-deserved life off dialysis; unfortunately, she got the phone call that . . . it is unsafe for her to donate.

“Feeling discouraged and broken, I wanted to express to my friend how brave and kind-hearted she is for doing something so scary!”

As Lindsey wrote on her Facebook page: “This world needs more Kims! There are at least a dozen kids in the province who need kidneys . . . hundreds of adults. Some of whom are parents of young children and all are deserving of a better life.”

A huge thank you to Kim DeRose from my little corner of the Kamloops kidney community. Thank you for being so unselfish. And, yes, the world, as Lindsey wrote, needs more people like you.


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.






The pressures of living with a youngster who needs a kidney transplant . . . How would you handle it?

For this exercise, you are required to suspend your belief mechanisms. Forget about your life for just a few minutes.

Forget about your normal comfort zone, or at least what used to be your normal comfort zone before 2020 arrived.

For the purposes of this exercise, you and your husband have three daughters. Despite having not yet turned four years of age, the youngest daughter has been doing peritoneal dialysis (PD) at home since she was 14 months old. Yes, she needs a kidney transplant. Other than a brief spell this season, she has been on the deceased donor list since early this year.

The summer of 2020, pandemic aside, hasn’t been much of a summer for you, at least not until the last couple of weeks. There were weeks spent in Vancouver after the youngest developed a PD-related infection.

You were able to return home in mid-August and you have worked to get the family unit back together while spending a week camping. It was great.

The plan was to come home for a day and then head out for another four-day camping adventure.

And then the phone rang . . .

Your youngest daughter is small. She has trouble putting on weight and keeping it on. This has been a major concern with the nephrologists and transplant surgeons. But her weight now is at a point where they feel that she is ready.

But you also know that a kidney from a live donor is the ultimate gift. Yes, a deceased-donor kidney is good, but one from a live donor would be so much better.

So you got home from the first camping trip at 3:30 p.m.

And the phone rang 30 minutes later. . . .
It was a nephrologist from B.C. Children’s Hospital (BCCH) telling you that they had a kidney. If there is to be a transplant, you are going to have to hit the road to the big city, like, right now.

But this nephrologist is a favourite and your brain is going a million miles an hour and you need to unpack from camping and you need to pack for another long stretch in Vancouver and . . . and . . . and . . . what about the other girls . . . what about the four-day camping trip . . . and . . . and . . . and . . .

The nephrologist, one you really trust, spells out everything. He explains that your daughter isn’t hard to match; in fact, there have been other potential deceased donors who have been rejected, mainly because of concerns over her size. He points out that she really hasn’t been on the kidney wait list for all that long, and adds that more time for her to grow isn’t a bad thing.

He explains that this particular donor was of ‘exceptional distribution.’ That means that there would be a higher risk of that person passing a disease along to your daughter. Yes, that is one of the risks associated with transplants, but you have known that from the get-go and haven’t looked at it as a deal-breaker.

Oh, what to do!

You’ve got camping behind you. You’ve got camping ahead of you. Or do you? Are you ready to walk away from that and spend another couple of months, or more, in Vancouver? And what of your daughter? You want to fall on your knees and ask: “Why me? . . . Why us?” But you know you can’t do that. You know that this is the responsibility that comes with parenthood. Maybe not to all parents. But it has happened to you and you know that you have to deal with it.

Over the past two years, you likely have cried more tears than there are stars in the heavens. And, yes, you knew the day — the moment — when you would be faced with this decision likely was going to come.

The responsibility that comes with being parents in this situation borders on soul-crushing. But you know one other thing . . . life goes on.

Before the phone call ends, you make the decision. You take a long, deep breath and you decline the offer of a kidney from a deceased donor.

At the same time, you know there is a live donor engaged in the testing process. You had hoped that it all might have gotten done while you were in Vancouver earlier in the summer. But it didn’t happen, something you found oh, so disappointing. Your understanding is that the testing has gone well, but you think that final results still are a couple of weeks away. At the same time, you know that things can change. You know that in your game nothing is certain. You have your fingers and toes crossed; the rabbit’s foot is in your pocket. You are hopeful . . . but you just never get entirely used to living with all of the uncertainty.

You only hope that you made the right decision in declining that kidney. As much as anything, your gut told you which way to go, and you are prepared to live with that.

So you unpacked and packed, and you got ready for four more days of camping.

You got everyone to bed, but . . . the youngest awoke at 1 a.m. One of the devices used in PD needed changing. So you changed it. Finally, it’s time for you to go to bed. But you check on her one more time. And you find that the transfer set has disconnected and she is soaked in dialysis fluid.

You are ready to tear out your hair. You are ready to scream to the high heavens. But there isn’t time for that. You know that a disconnection such as this could be a disaster because of the risk of contamination.

You clamp the line and get her to the hospital where a new transfer set will be installed in a sterile procedure. By now, it’s 3 a.m., and when you get to the hospital you find that it is busy. Lots is going on. But they find a nurse who has PD training and, between the two of you, the job gets done, and you are home by 4:30.

You still can’t go to bed, though. You have to do three flushes of the system and then collect a sample that can be checked for infection. You are in bed, finally, at 6 a.m., and up three hours later. You have to get the sample to the lab, fill prescriptions . . . and get packed . . . and leave for the lake.

While at the lake you are flooded with emotions. You realize the enormity of the decision that you made. You know that you have to live with it. All the while you are keeping a close eye on the young one because of the fear of infection. You’ve already dealt with one infection this summer; you really don’t want to see another one. But you know that you have to play the cards that are dealt. So . . .

Still, your brain won’t shut off. When you made the decision, it just felt to you that if the transplant was complicated or didn’t go well you’d never forgive yourself for not waiting for a live donor.

But with the decision made and days sliding by, you are thinking that if an infection rears its ugly head you may have made a huge mistake.

Despite everything, the four days of camping are great. The only complaint is that they fly past. The five of you hung out together and it was fun. The two older girls are amazing and for that you are forever thankful. The way they cope with all that swirls around them is a story in itself. When you think about what they have gone through over the past couple of years it’s hard to keep the mist from your eyes.

With the camping days behind your family for now, you are thinking that you made the right decision. The little one is almost back to her old self, before that infection hit and stole her energy. Her mood is better, more positive, these days, and she isn’t as withdrawn as she had been. Even with all that she has been through over the past couple of months, she has made progress as a person and her personality has grown. Yes, she is shy, but there are signs that she is coming out of her shell around other people.

And now you’re home again. It’s the last long weekend of this crazy summer, and you know that things are about to get nutso. School. Your work. Your husband’s schedule is in the mix. There is care for the little one to consider. There was a lot of support for you during the last school year, the one that ended prematurely, but some of that won’t be there this time and you’re not sure how it’s all going to come together.

But you have learned over time that life goes on. Yes, it does.

——

OK. You got all that? Now take a minute and think about it all. Think about having to make a decision of that magnitude. We’re not talking about standing in front of a cooler and deciding whether to buy one litre of milk or two. This is about having the life of a child in the palm of your hand. Think about having to make that kind of decision.

That’s what Lindsey Backmeyer, her husband Pat, and their two older daughters, Ksenia and Tavia, have been through over the last while as Ferris, the youngest member of the family, continues to deal with health issues.

With the calendar having turned from August, Lindsey wrote on Facebook that she “really hadn’t looked at September at all until this past week because, well . . . it’s September. So yeah, we got this. We totally got this.”

Yes, Lindsey, you do. You really do!

——

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.

Six weeks after the not-so-excellent adventure began, the Backmeyers are together again . . .

The latest chapter in the lives of the Backmeyer family has ended and they are together again, all five of them, in their Kamloops home.

It was in late June when Ferris, 3, who had been doing peritoneal dialysis (PD) since she was 14 months old, was diagnosed with fungal peritonitis. That meant, in short, another trip to B.C. Children’s Hospital in Vancouver, the removal of the PD catheter, a brief switch to hemodialysis, and then a move back to PD, all in the span of about six weeks.

Tavialeft
Tavia and Ksenia . . . they show maturity beyond their years. (Photo: Lindsey Backmeyer/Facebook)

Ferris and her parents, Lindsey and Pat, were in Vancouver the whole time, while older sisters Ksenia and Tavia (aka The Bigs) got in a three-week visit.

Upon returning home, Lindsey, as she has done throughout, turned to Facebook and bared her soul. (We can only hope that folks in the renal community have been following Lindsey’s writings, because her musings shouldn’t be lost to the ravages of time; rather, they should be edited and packaged as a support guide to parents who find themselves in similar circumstances.)

In her latest entry, Lindsey touches more on The Bigs than she has in the past and, in doing so, provides a real look at the impact a situation like this can have on the family unit.

“There really aren’t enough words to say how good it feels to be home and together as a family,” she writes. “Our final day went so well! Anesthesia used (Ferris’s) PD cath to put her to sleep and then placed the IV. There were no tears with the procedure and we were back in Kamloops by 5 p.m.

“I got to see the bigs! Oh how I missed these big girls so incredibly much!! Ugh let me tell ya . . . we’ve spent 30 days apart this summer and it was really just much too long. It’s not how we’ve done things before but then the world just isn’t the same as it was the times before either.”

In April 2018, Michael Potestio of Kamloops This Week wrote: “A few weeks after she was born, Ferris . . . 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.”

That diagnosis later was confirmed, and Ferris’s kidneys also were found to be failing.

The geneticist who made the diagnosis told Lindsey and Pat “that we would be responsible for the books our older children write as adults.”

Supplies
When your little sister has kidney issues, there are medical supplies in your home. (Photo: Lindsey Backmeyer/Facebook)

“At the time,” Lindsey writes, “the girls were 3 and 5 years old. I’ve had people tell me ‘Oh, that’s really harsh,’ or think it’s inappropriate. But the reality is that he really hit the nail on the head.

As Lindsey points out, Ksenia and Tavis are growing up “with a sister who is medically fragile.”

As a result, “they are comfortable and at home at places like (B.C. Children’s Hospital and Ronald McDonald House).”

Lindsey also points out that their Kamloops home includes “a kitchen full of medical supplies, a sister who is tube fed and is on dialysis in their parents’ bedroom and gets needles by mom and dad, and nurses in their home on a regular basis. I mean, the perfect making of some really good books if you do ask me!

“But man . . . the dynamic is forever changing. They are older now and the stakes feel really high.”

After being at home for two days, Lindsey says she is “pretty confident the girls will look back on this one as the summer that Ferris was sick but they got to do lots of fun things.”

icecream
Ferris was happy to be back at home where she could play with her ice cream truck. Caramel sundae, with pecans, please. (Photo: Lindsey Backmeyer/Facebook)

That included “a couple weeks at the lake with grandma and papa, sleepovers and camping with friends, and three weeks in Vancouver with us.”

Still, Lindsey recognizes that it just isn’t that simple.

“I can tell,” she writes, “that overall they had a really good summer but they also experienced a whole lot of feelings. Big ones. In chatting with them I can see such maturity and reasonable understanding of our situation.

“There isn’t resentment, just love and worry for Ferris. They feel loved by everyone who spent time with them. They will be amazing humans and hopefully write amazing books one day.”

At the same time, Ferris is back home and she knows it.

“Ferris is a completely different kid than she was a few days ago,” Lindsey writes. “She’s so happy to be home. She’s walking all over. She sure missed her ice cream truck and play kitchen. She is a different kid when her sisters are around in the best way possible. So yeah, home.”

And just like that it’s the middle of August and, in the Backmeyer family, Lindsey writes, it’s “the end to another chapter in the book I don’t have time to write.”

——

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.

www.transplant.bc.ca/health-info/organ-donation/living-donation

Ferris done with hemo? Family is hopeful . . . You need a kidney, but how do you ask for one? We’ve got tips . . . Celebrating kidneyversary by wingwalking

Could it be that Ferris Backmeyer is through with hemodialysis?

Ferris, 3, is in Vancouver with her mother, Lindsey, and father, Pat, while the medical staff at B.C. Children’s Hospital tries to get her kidney situation straightened out a bit.

PlayDoh
Ferris is a picture of complete concentration as she works the Play-Doh while in hospital. (Photo: Lindsey Backmeyer/Facebook)

Ferris, who is from Kamloops, had been doing peritoneal dialysis (PD) at home until an infection brought that to an end. In Vancouver, she was transitioned to hemo, but had some issues.

Lindsey wrote on Facebook on Saturday that she is “cautiously optimistic that (Friday) was her last hemo.”

Lindsey continued: “The best news is that she’s active again on the deceased transplant list!”

Ferris had been placed on the list earlier this year and the family had been given the OK to look for a living donor. But all of that ended when Ferris was laid low by the infection.

Now the Backmeyers are starting to think about coming home.

Lindsey said they are “trying not to get too exited, but if labs are good and her weight isn’t up too much Monday they will book to have the central line removed Wednesday or Thursday. Once it’s out . . . we can come home, home!!”

Ferris has been on dialysis, usually PD, since she was 14 months old. She now is 3.5. So all if this isn’t new to Lindsey, who has been’t shy about explaining all that has happened during the family’s journey.

On Saturday, she wrote that “this whole experience has been eye-opening to say the least.”

She added that they have always known “how vulnerable and fragile Ferris is” and that she feels “we already had a good handle on that.”

But, Lindsey wrote, this last while has given them a look at “what life after transplant might look like . . . a little window of what’s to come.”

Someone doing PD hooks up to a cycler every single night; there aren’t any nights off. During this stint in Vancouver, with Ferris doing hemp for a bit, there were days without treatments.

“It was surely nice not having to connect her to anything at home,” Lindsey wrote. “She slept so much better not being on PD at night and it was very nice for her to be able to just go to bed whenever and wake up whenever without having to stay in bed to finish treatment.”

With Ferris back on a waiting list for a transplant, Lindsey admitted that there are scary moments when thinking about that happening, but . . .

“As terrifying as transplant feels,” she explained, “living on dialysis is equally as scary. While having its perks . . . hemp is not ideal for a kid Ferris’s age. And not so much the act of having to go into the clinic four days a week for 3.5-4 hours. That part is fairly easy. It’s the managing of a dangly central line, a line that was technically difficult to place and literally her life line.”

There also have been other issues with which to deal.

“Her skin is so angry from the dressing (we’ve tried a couple different kinds),” Lindsey wrote. “She has crap for energy and they can’t seem to catch up on red blood cell production despite majorly increasing both dose and frequency of her aranesp injection.”

Patients with chronic kidney disease who are on dialysis are treated with aranesp in the hopes of increasing the red blood cells.

“And the biggest one . . . not being able to come home,” Lindsey wrote. “PD is a lot safer and will allow us to come home and for that I’m so grateful!

“Thanks so much to everyone who has literally carried us through. I miss home. I miss our friends. I really miss my big kids. Heck I even miss being able to go to work.

“Home soon, we hope!”

They actually tried PD earlier in the week, going with what Lindsey said were “really small fill volumes for 13 hours.”

She added: “It went pretty good. Even removed some fluid which no one really expected. She’s had some drain pain which definitely sucks.”

At that stage, Ferris’s blood pressure was “all over the map,” although “she looked completely fine and was happily smashing Play-Doh.”

There also have been hemoglobin issues which Lindsey feels has been “majorly contributing to her lack of physical energy.”

But there have been improvements.

“She’s playing on her feet more and she wants to swing big and high on the swings again,” Lindsey wrote. “She’s in a much better mood. However, she’s still really weak when it comes to walking — she isn’t really walking much at all.”

Hopefully, more PD and end of hemo will get Ferris feeling more energetic.

In the meantime . . .

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.


So . . . you have kidney disease and a transplant is in your future. You know that having a living kidney donor is the best you can hope for, but you are reluctant to ask someone else for one of their organs. . . . I can relate. Dorothy went through that exact scenario. After four years of doing peritoneal dialysis (PD), she got a kidney through the Living Kidney Donor Program, with her best friend giving up a kidney in order for Dorothy to receive one. . . . If you find yourself in that position, Risa Simon has written a piece that may help you at least get started. It’s right here and well worth a read.


So . . . you have had a kidney transplant. How do you celebrate the anniversary of that exciting moment in your life. Perhaps you go to your favourite restaurant. Maybe you open a bottle of your favourite wine. . . . If you’re Nicky Clifford, who had a kidney transplant more than 26 years ago, you go walking on a wing. Yes, you do. . . . Check out her story right here.





Zach16

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

Ferris and Lindsey Backmeyer: A mother’s love is everything when her child continues to fight . . .

If you’re a regular here, you will know that we have been paying particular attention to Ferris Backmeyer and her family, who are from Kamloops.

That’s because her mother, Lindsey, has been keeping friends and family (and us) updated on Ferris via Facebook.

Lindsey has poured out a mother’s heart in her posts, refusing to hold anything back. She has written with angst and anger and pain and, yes, even some humour as Ferris, at just three years of age, continues to travel a road that hopefully will end with a kidney transplant.

The outpouring of emotions is understandable as Lindsey helps guide husband Pat and Ferris’s two sisters — Tavia and Ksenia — through all of this.

The older girls — the “bigs” as Lindsey refers to them — were in Vancouver for three weeks before returning home with Lindsey’s mother after the weekend.

Lindsey and Pat now are completely focused on getting Ferris through this rough patch, helping her get well enough to go back on the transplant list, and back home. But the last bit hasn’t been an easy stretch.

For example, here’s a bit from a Facebook post by Lindsey on July 20 after doctors implanted a central dialysis line:

“Ferris had complications intraoperatively. The line was technically difficult because of her anatomy and while they were placing it they irritated her heart. Her higher potassium levels lower her threshold for things like that and she went into a PEA arrest. She had roughly 3 minutes of CPR and 1 dose of epinephrine when they got her pulse back. She was hypoxemic and difficult to ventilate for a bit afterwards. They were confident that it was noticed very quickly and that she responded fairly quickly. Thankfully they were able to extubate her and pull her art line before going to the dialysis unit.”

One day later, Lindsey wrote:

IV
Despite all that she has been through, Ferris Backmeyer, 3, can still find a smile for the camera. (Photo: Lindsey Backmeyer/Facebook)

“As for today . . . she’s super low key but perked up by evening and wanted to go to the beach and build sand castles . . . so that’s what we did:) she spent about 5 minutes total on her feet today but that’s okay!! Lots of couch time. She’s sore and much happier with Tylenol on board. I’d be lying if I am not super anxious/protective over her right now. She has little pen crosses on her pulses and blood in her hair that I rinsed off into a paper towel. A bath was not a today thing. She has no idea what a big day yesterday was, and I don’t think I’ll ever forget it.”

Last Thursday, Ferris had more surgery as a peritoneal dialysis (PD) catheter was implanted. She had been doing PD at home when fungal peritonitis brought it all crashing down. That resulted in this most-recent trek to B.C. Children’s Hospital and all that has followed.

After Thursday was over, Lindsey, her emotions on her sleeve by now, wrote: “It was a super hard, inpatient kinda day.”

A day later, there were more complications, this time with cell counts.

“The question of when she could get listed again (for a transplant) comes up and at this point we just don’t know,” Lindsey wrote. “I’d be lying if I said I wasn’t shattered by today’s news.

“My heart is breaking for Ferris. She normally takes all the medical stuff in stride and right now she’s really struggling. I call it a trauma cry because it’s one I have hardly ever seen before and she looks like she’s being tortured. With things she used to handle like a champ. As she gets older navigating her mental health is so much more challenging and so ridiculously important!”

The next day, doctors had to put in an IV line, which brought this response from Lindsey:

“Oh man . . . after posting how she’s not doing so well coping . . first time ever IV placement without tears! This is her 5th IV this go-round and she’s not left with a lot of sites. She was so ridiculously cute and compliant for the nurse and she was friggin amazing with Ferris! Decent end to a not so awesome day!!”

And now the Backmeyers are playing something of a waiting game. As Lindsey wrote on Monday:

Couch
Ferris likes the couch a whole lot more than a hospital bed. (Photo: Lindsey Backmeyer/Facebook)

“So far the cultures haven’t grown anything! They have stopped the antibiotics. Gonna repeat a sample on Wednesday and if cell counts have trended down will likely drop the antifungals (she’s been on fluconazole since we got down here a month ago). Then it will be a bit of a wait-and-see. I think they will go ahead and start using the catheter as planned. Best case scenario . . . home in a couple of weeks!! Trying so desperately to remain optimistic!!

“Ferris wants nothing to do with a hospital bed after she gets out of it in the morning. All bad things start with that bed . . . I can’t really blame her! She’s passed out on the couch the last 3 nights. Hoping for a super uneventful week!!”

BTW, Lindsey and Pat celebrated their 16th anniversary last week.

“Happy Anniversary to the most incredible momma bear,” Pat wrote, above a photo of a snarling grizzly bear. On the photo, it read: “Fate whispers to the warrior, ‘You cannot withstand the storm.’ And the mama bear whispers back, ‘I am the storm.’ ”

——

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


Here’s the deal on the above tweet. . . . It’s the story of Carrie, who has had a heart transplant and now has met the family of her donor. . . . From the Provincial Health Services Authority: “Filmed in February 2020, Carrie finally got to hug the family of Darcy, her organ donor. After 17 years of writing letters to each other, she was met with open arms by his mother Marie and brother Daryl in a first ever face-to-face meeting.” . . . The video is right here.





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

Sunday a day of freedom for Ferris . . . Zach needs a kidney, too . . . Want to help? Please contact Living Kidney Donor Program

The Backmeyers have found some freedom in Vancouver with Ferris being treated as an outpatient, at least for now.

Ferris, 3, slept on a couch on Friday night, a rarity for a child who has been on dialysis since she was 14 months old. Today (Sunday), she won’t have to dialyze and I really would love to know what will be going through her mind as she spends one entire day without having to hook up to a cycler for peritoneal dialysis (PD) or a hemodialysis machine.

FerrisSwing
Ferris spent some time doing kid things the other day in Vancouver. (Photo: Lindsey Backmeyer/Facebook)

The Backmeyers are from Kamloops. Ferris is in need of a kidney transplant. She had been doing PD at home, but she got hit with an infection, so Mom and Dad (Lindsey and Pat) had to take her to B.C. Children’s Hospital a week ago. There, doctors removed her PD catheter and transitioned her to hemodialysis, at least for the short term.

Lindsey informed Facebook followers early Saturday that they will take Ferris to BCCH on Monday, Wednesday, Friday and Saturday for hemo, with each run taking about three hours. Including pre- and post-, it takes about 3.5 hours. That is quite a change for a little girl who is used to being hooked up to a cycler for about 12 hours a night.

“Still gives us a decent amount of time out,” Lindsey wrote.

She added that they spent some time out Friday evening “and I think it’s safe to say we are all more comfy here! Now if it would only stop raining!!!!”

They almost certainly will be in Vancouver for another few weeks.

“The most current plan is to admit her during the first week in August and reinsert her PD catheter,” Lindsey wrote. “If it goes well we could be home mid-August. While it’s not a set-in-stone plan . . . it’s the one we have for now!”

On Thursday, Lindsey had written that “Ferris is slowly feeling better each day. She hasn’t had any Tylenol since noon (Wednesday) and has only cried a couple times in pain. . . .

“She’s still really low on physical energy but she continues to eat! We are back to full feeds and she’s still eating a ton. She’s eaten half a chicken in three days. . . . She’s constantly yelling for different foods . . .”

This will be a big week for Ferris as her big sisters are scheduled to arrive on Wednesday.

According to Lindsey: “Ferris asks about them a lot. They worry about Ferris and us when we are down here. It’ll be better for everyone if we are together. We had already discussed the possibility of spending the summer here if a transplant were to happen. Kinda preparing them that all our summer camping plans might be derailed. So this isn’t totally unexpected.

“The realization that we are here for awhile has been a huge pill to swallow. In fact I haven’t really yet. I’m still looking at how big it is!! For now, we plan for next week and hope that Ferris gets a bit stronger each day!”

——

Meanwhile, Zach Tremblay, now 17, continues to trek from his home in Robson, B.C., to Trail to do dialysis as he waits and hopes for a kidney transplant.

You bet that Zach can relate to what Ferris is going through, because he was transitioned from PD to hemo early this year.

Zach16

——

If you are at all interested in being a living kidney donor, contact the Living Kidney Donor Program at St. Paul’s Hospital in Vancouver. You don’t have to make an immediate commitment, but the folks there are able to prove you with more information and answer any questions you may have.

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


There are a lot of tests involved in finding out whether a potential kidney donor and recipient are a match. Three of those are blood tests — blood typing, tissue typing and cross-matching. . . . There’s a lot more on that right here.