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.





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

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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




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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:

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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





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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.


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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.

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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.


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

Living Kidney Donor Program

St. Paul’s Hospital

6A Providence Building

1081 Burrard Street

Vancouver, BC V6Z 1Y6

Tel: 604-806-9027

Toll free: 1-877-922-9822

Fax: 604-806-9873

Email: donornurse@providencehealth.bc.ca

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.

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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.

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——

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.





Ferris ‘definitely turned a corner’ and winning hearts of the nurses . . . Tips on asking for a kidney

It was a Happy Canada Day for the Backmeyer family of Kamloops as Lindsey reported via Facebook on Wednesday that Ferris, her three-year-old daughter, has “definitely turned a corner!”

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Ferris wants you to know that her appetite is returning. (Photo: Lindsey Backmeyer/Facebook)

Ferris is in need of a kidney transplant and is on the list, but the process stalled after she developed fungal peritonitis last week. As a result, her parents, Lindsey and Pat, had to take her to B.C. Children’s Hospital in Vancouver. Patients with kidney disease who are doing peritoneal dialysis (PD) fear peritonitis. In this instance, Ferris had to have her catheter removed and has been transitioned to hemodialysis — she began with a three-hour run on Monday. She had been doing PD at home since she was 14 months old.

On Wednesday, Lindsey reported that Ferris’s “pain is less and we haven’t needed morphine since Monday afternoon but are still reliant on regular Tylenol. She slept 12 hours straight (Tuesday) night and I got a solid nine hours . . . it was so so good!”

Ferris’s oxygen levels also have gotten better so she no longer is wearing a monitor.

For now, as Ferris continues the transition to hemo, she is on a diet that restricts fluid and food intake.

“It’s soooo weird for her to be constantly asking for food and actually eating food,” Lindsey wrote. “If anything it confirms my belief that she will go back to being an oral eater once she gets a kidney transplant.”

Lindsey also said they could be looking at “a long time” in Vancouver. In fact, she said, “It could be until transplant.”

Eventually, doctors will try to get Ferris back on PD, but in order for that to happen another catheter will have to be put in place. When might that happen? Lindsey said she was told “three weeks . . . by nephrology; however, urology said three months.”

She added: “We’ve also been told that there is only a 50% success rate of peritoneal dialysis after having a fungal peritonitis. I’m trying not to get too stressed about what that means for our family.”

For now, Lindsey and Pat are staying in Kitsilano, but will move to Ronald McDonald House in about four weeks. Ferris’s older sisters, Ksenia and Tavia, who remained in Kamloops, are expected to visit in the near future.

In the meantime, Ferris spent Monday “eating all the food, colouring and playing Play-Doh!”

And it will bring a smile to your face to hear that “she’s winning the hearts of all the nurses, which of course doesn’t surprise me one little bit!”

——

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


It’s official! Nova Scotia will be turning to a system of presumed consent for organ and tissue donation as of Jan. 18. The legislature passed the law in April 2019, and when it takes effect Nova Scotia will be the first province in Canada to go that route. . . . What it means is that if a person is going to have to take steps to opt out if he/she doesn’t want to be an organ donor. . . . “I fully expect that we’re going to have the best donation rates in the country in a few years. That’s my objective,” Dr. Stephen Beed, the medical director of the province’s organ and tissue donation program, told Michael Gorman of CBC News. “I want to be able to provide the best opportunity we can for Nova Scotians by having the best program in the country, and that’s where I want us to be. Now we have the support to do it.” . . . Gorman’s story is right here.




Ferris’s journey continues with transition to hemodialysis forced by infection . . . Mom: “Ferris did pretty great . . .”

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Ferris and her mother, Lindsey, are back at B.C. Children’s Hospital, along with good friends Elmo and Grover. (Photo: Lindsey Backmeyer/Facebook)

It was June 19 and things were looking clear for Ferris Backmeyer. Really clear.

Ferris, 3, was wearing her new glasses and it was obvious that she was seeing some

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Ferris showed off her new glasses just a few short days ago. (Photo: Lindsey Backmeyer/Facebook)

things in great detail for the first time. Oh, the concentration as she looked at a book, turning pages and pointing out various things with either index finger.

But, oh my, life can take some quick turns.

Five days later, Ferris, who has been doing peritoneal dialysis since she was 14 months old, was battling fungal peritonitis.

As her mother, Lindsey, posted on Facebook: “The treatment 100% of the time is catheter removal. She is scheduled for a hemo line insertion Monday . . . Looks like we will be spending our summer at BCCH.”

Someone doing peritoneal dialysis has a catheter inserted in their midsection into the peritoneal cavity. The nightly fluid exchange, via a dialysis machine called a cycler, is conducted via the catheter.

Ferris was back at B.C. Children’s Hospital in Vancouver on Saturday and, as Lindsey mentioned, she was to have had a hemodialysis line put in today (Monday).

But those plans changed on Sunday . . .

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Ferris was back on the ward, along with two of her friends, on Sunday night. (Photo: Lindsey Backmeyer/Facebook)

“My sweet girl is in the OR right now,” Lindsey wrote on Sunday afternoon. “We had a really rough night. She is definitely getting worse in regards to pain and her breathing wasn’t awesome either. She was having central apneas and needed O2. She essentially slept through 2 lab draws this morning and endless assessments. They decided to pull the catheter and insert the hemo line today.”

And the little girl came through with flying colours. Yes, she is a real trouper in every sense of the word.

On Sunday night, Lindsey wrote that “Ferris did pretty great I think!”

There were a couple of hiccups, but the medical staff was able to get Ferris through all of that and she had her first “little test run on hemodialysis.”

That was “pretty uneventful . . . so uneventful that we got to come back up to the ward!”

Ferris woke up at 9 p.m., and was asking for food.

“Cheese and ranch dip are happening,” Lindsey wrote. “I’m trying to gently get food into her without making her vomit because her tummy still really hurts.”

And that pretty much took care of Sunday for the Backmeyers.

On Saturday, Lindsey wrote that she expects this stay at BCCH to last at least six weeks. They got settled in where, as Lindsey wrote, “It’s familiar so settling in was pretty easy.”

Ferris, if you’re new here, needs a kidney transplant, and the family was given the OK to look for a live donor a few months ago. A transplant won’t happen now, at least not while Ferris works to overcome this setback.

According to Lindsey, “Ferris handled things like a champ” on Saturday. “No tears aside from the IV . . . and it took a few attempts. She was over it before they were done drawing the blood. She’s not responding to any of the treatment we’ve provided at home really. Still spiking fevers, her drain fluid is awful and she just doesn’t feel good. They started her on IV antifungals . . .”

When you find a moment of quiet time in your schedule, have a thought for Ferris and her family. They really will appreciate it.

“I’m continually amazed and sometimes wonder why people seem to love us so much and just come together and help us,” Lindsey wrote. “We are soooo greatful for everybody!”

Had all of this not happened, the Backmeyers would have been starting a two-week camping trip. So much for that. But such is life when you live with someone who has kidney disease.

Late Sunday night, Lindsey wrote: “Huge thanks for all the support, prayers and good vibes . . . they are getting us through!”

——

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

Living Kidney Donor Program

St. Paul’s Hospital

6A Providence Building

1081 Burrard Street

Vancouver, BC V6Z 1Y6

Tel: 604-806-9027

Toll free: 1-877-922-9822

Fax: 604-806-9873

Email: donornurse@providencehealth.bc.ca


If you were one of those who donated to Dorothy for the 2020 Kidney Walk, you will be interested in the tweet that follows. By donating, you became a member of Dorothy’s Team and you will find her name on the list. Check it out . . . and thank you for your support. . . . She has raised $3,190 for the 2020 Kidney Walk and her page remains open for donations right here.


Dave McKeague, 72, and his daughter Caileen, both of Saskatoon, have taken part in the Kidney Walk for the past four years. . . . Dave is in kidney failure and on dialysis. . . . Caileen found out more than a year ago that she is a match, and now all that’s needed is a date for transplant surgery at St. Paul’s Hospital in Saskatoon. . . . They had hoped to have it done in April or May, but the pandemic got in the way. That means they still are waiting for a date. . . . Brady Ratzlaff of Global News has their story right here.



Ferris’s story continues with one more trek to Vancouver . . . Oh my, but she’s a trouper! . . . Can we find kidneys for her and others?

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Ferris Backmeyer, 3, is an Elmo fan. (Photo: Lindsey Backmeyer/Facebook)

Ferris Backmeyer, our favourite three-year-old, and her mother, Lindsey, spent a couple of days in Vancouver earlier this week. It was their first trip since the end of January; prior to that they had been there five times in four months.

As Lindsey put it in a Facebook post, the lack of travel has been the family’s “COVID silver lining.”

Shortly after birth, Ferris was diagnosed with Mainzer-Saldino syndrome, a disorder that impacts the kidneys, liver and eyes, and causes skeletal abnormalities.

She has been doing peritoneal dialysis (PD) since she was 14 months old, and now is on the active list as we try to find a donor — preferably a smaller adult — for a kidney transplant.

After their most recent trek to Vancouver, Lindsey posted an update on her Facebook page that I have edited for size:

“Ferris amazes me at how tolerant she is of medical appointments and procedures,” Lindsey writes. “We had nine hours worth of appointments in two days. So much of it is an adventure for her, especially since COVID — a major outing where everyone just oogles over how cute she is.

“She mostly has a ‘just do whatever you need to do’ attitude for ultrasounds, ecg’s, physical exams, vitals. Puts on the bravest face for needles and has been mostly getting through without any tears.”

However, it seems Ferris has thing about having her height measured . . . unless it’s at home.

“It’s like the biggest, most insane meltdown every single time,” Lindsey writes. “Exhausting. I’m certain I get the most accurate heights at home because she loves having her height measured at home! lol”

Lindsey writes that the trip was mostly uneventful.

“Renal management has been a little extra to manage lately — as in talking to them on the phone and by email every weekday for the past couple of weeks. It’s been a concern of mine that maybe they are thinking dialysis isn’t working very well. We’ve had a few episodes lately of inadequate fluid removal. They confirmed that it’s something that’s on the radar but we are seemingly back on track for now.

“They also assured me we won’t just treat numbers and we will go with how she’s feeling and she has been having some great days! However, only a few days of dialysis not working and she wouldn’t feel good at all. Everyone’s just got their fingers and toes crossed that PD will continue to work for her until she gets transplanted.”

Of course, Ferris has other issues than her kidneys, and vision is one of them.

“Ferris has retinal dystrophy and her vision is affected,” Lindsey writes. “So far we see difficulties in dim light and blindness in the dark. Her peripheral vision is also affected. That’s what we are observing, although I’m guessing with how adaptable she is, it’s probably worse than we even think. . . . I would say she definitely can see pretty well for the most part but we definitely can see some visual disability. . . . They have decided we should try glasses…so that’s up next!”

Lindsey also noted that they “met with anesthesia as well (for) a pre-transplant assessment. . . . He helped affirm my feelings that while she has risk factors, she’s been doing so well in a lot of ways. She handled anesthesia fine before, her heart is in better shape now, lungs are doing great, liver has chilled out with medication . . . no reason to believe she won’t have a successful kidney transplant!”

——

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


It was Saturday evening when I posted here about Dorothy and I knowing seven people awaiting kidney transplants.

The ink wasn’t dry, as they used to say in the newspaper business, on that post when I received a note from a hockey friend.

It seems he now is waiting and hoping, just like the others.

He was telling me I could “add another acquaintance to your list as I, too, now need a transplant.”

His GFR is at 12. If you aren’t familiar with it, GFR is Glomerular Filtration Rate and it is the measure of kidney function. In short, his kidneys are working at 12 per cent.

When Dorothy’s GFR got to 11 in 2009, the staff in the renal clinic here began preparing her for dialysis. Things have changed in the past few years and, depending on circumstances, some people have been kept off dialysis until their GFR slid to eight and even six.

He will be finding out in the immediate future “if they will begin dialysis.”

As I wrote, he now is waiting and hoping.

Waiting to find out about dialysis, all the while hoping for a transplant.

——

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


The list grew to nine on Sunday afternoon when I came across a story in Kamloops This Week on Rosalyn and Jim Butterfield, who have joined the Kamloops Kidney Support Group on occasion.

Rosalyn and Jim are working to find a kidney for their son, Mike, who is 44 and has polycystic kidney disease, which is commonly referred to as PKD. While his parents live in Kamloops, Mike lives and works in Vancouver. He now is in Stage 4, so the next step will be dialysis or a transplant.

Sean Brady’s story on the Butterfields is 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


The list grew to 10 with the discovery that the son of family friends on the Prairies, who is doing hemo-dialysis, has begun the preliminary work involved in the process of having a transplant.

The point to all of this is that we all need to be aware that kidney disease isn’t going anywhere. In fact, the inroads it is making are scary as it becomes more and more of a factor in our daily lives.

Think about these numbers that I found on the Centers for Disease Control and Prevention (CDC) . . . Yes, they are American, but you would have to think the numbers for Canada are close to these . . .

15 percent of U.S. adults — 37 million people — are estimated to have chronic kidney disease;

Nine in 10 adults with CKD don’t know they have it;

One of two people with very low kidney function who aren’t on dialysis don’t know they have CKD.


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