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.


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.

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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.

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.





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.


Zach16



News on Ferris from Backmeyer family . . . They’re excited, but also ‘nervous, sad and scared!’

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FERRIS BACKMEYER: She may be getting closer to a kidney transplant. (Photo: Lindsey Backmeyer/Facebook)

I’m sure lots of us — heck, all of us! — could use some good news today.

Right?

OK, here you go . . .

Lindsey Backmeyer, via Facebook, told the world on Friday that Ferris, her three-year-old daughter, “is officially active on the deceased donor list!”

Lindsey added: “While I have very few details on this, I know she’s top of the list for her blood type and no one thinks we will wait long.”

The Backmeyers, including older sisters Ksenia and Tavia, live in Kamloops; in fact, father Pat often puts on the big suit and plays the role of Digger, the Blazers’ mascot.

Ferris, who does peritoneal dialysis, was found shortly after birth to have Mainzer-Saldino syndrome that results in kidney disease, eye problems and skeletal abnormalities.

Every night since Ferris was 14 months old, she has been hooked up to a cycler so that a fluid exchange can be performed via peritoneal dialysis while she is in bed.

This happens every night . . . at home or on the road. Last night, tonight, tomorrow night . . . no exceptions.

The Backmeyers also have been searching for a living donor through the Living Kidney Donor Program at St. Paul’s Hospital in Vancouver.

In February, Lindsey told Jill Sperling of CFJC-TV:

“It is preferred to have a live donor kidney. Those kidneys just typically transplant better, they do better and they typically last longer. So, for Ferris, she’s going to need more than one kidney transplant in her lifetime.

“Also, for her we need a small kidney, so a small human, a small person is what they’re kind of looking for.”

Now, though, Ferris, whose blood is B-, now is on the deceased donor list. Unfortunately, of course, a successful outcome for Ferris means that someone else is going to have to die.

The Backmeyers are fully aware that is part of having to deal with organ transplantation.

As Lindsey wrote: “With this comes so many emotions! (Older sister) Tavia says she’s excited for Ferris but also nervous, sad and scared . . . me, too, my big girl . . . me, too!”

——

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

——

Upon seeing the news about Ferris, Jana Tremblay wrote: “Yay Ferris! We are so excited for you.”

Jana’s son Zach, 17, also is waiting and hoping for a kidney transplant. He recently had to make the transition from peritoneal dialysis to hemodialysis because the former was losing its effectiveness.

Zach and Jana, who are from Robson, B.C., spent four months in Vancouver dealing with the transition at B.C. Children’s Hospital. They now are back home and Zach travels to Trail, B.C., four times a week in order to do hemodialysis at Kootenay Boundary Regional Hospital.

If you have any interest in being a living kidney donor, just check out the above information and make the call or send an email. Do it even if all you want is some more information.

A three-year-old girl’s family and a 17-year-old young man and his family are waiting and hoping . . .


What’s it like having a kidney transplant with a pandemic raging all around you? . . . Michael McSherry, 32, had known for 14 years that he was in need of a transplant, so when he got only a few hours notice, he was ready to get to the Pennsylvania hospital. He was in only empty hallways, anyone near him wore a mask and his wife wasn’t allowed in the hospital to see him. . . . Most importantly, the surgery was a success. . . . Priscilla Liguori of ABC27 News has more right here.




Emotions of a kidney mother: ‘I go from being so sick of dialysis and ready for a better life to full-on terrified.’

Ever wonder what it’s like to be a parent to a youngster with kidney disease? Here’s an emotional posting from Lindsey Backmeyer of Kamloops, whose daughter, Ferris, 3, is in need of a transplant and continues to do daily peritoneal dialysis at home:

“So it’s pretty official and looking like Ferris will be listed on a deceased donor list in early March!!

FerrisJan2020
Ferris Backmeyer, 3, is about to go on a deceased donor list in the hopes of finding a kidney match. (Photo: Lindsey Backmeyer/Facebook)

“I can’t accurately put into words how that makes me feel but I’ll try. I go from being so sick of dialysis and ready for a better life to full-on terrified.

“Literally as soon as a month from now our whole world can get blown apart. Sounds dramatic but that’s how it’ll feel. I’ll have to hand my daughter’s life over to surgeons hoping they do some of their most amazing work. We will fear for her life. Full on fight or flight mode. I don’t know how anybody can feel ‘ready’ for that.”

Lindsey added that her husband, Pat, “should know by end of April whether or not he (can) donate through the paired exchange program. If he is approved we will likely temporarily come off the (deceased donor) list and do a round of that to see if a match can be made.

“A live donor really is what’s best for Ferris so we remain hopeful one can be found. As of our meeting on Friday there aren’t any living donors approved to donate to Ferris.

“Please share to help find my girl the kidney she so desperately needs!”

——

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’re a regular here, you are well aware of the travails of Zach Tremblay, 16, and his mother, Jana. They are stuck in what Jana calls “IHA limbo” as they wait until the Kootenay Boundary Regional Hospital gives the OK for him to begin hemo-dialysis treatments there. . . . They have been in Vancouver since Jan. 6 and it seems they may be there until at least the end of March. . . . Gord McIntyre of Postmedia has more on their story right here.


Dr. Anson Cheung, one of two heart surgeons at St. Paul’s Hospital in Vancouver, performed four heart transplants in a 60-hour stretch in the autumn of 2019. . . . “I even did open-heart surgeries during that time,” Dr. Cheung told Susan Lazaruk of Postmedia for a wonderful story that is right here. . . . One of the heart transplants involved Prem Sagar of Surrey, who underwent surgery on his 68th birthday.


Happy birthday to Ferris . . . How about a new kidney for a belated birthday present?

Ferris Backmeyer of Kamloops turned three years of age this week, and we all are hoping that this is the year in which she gets a new kidney.

FerrisJan2020
Here’s hoping that this is the year in which Ferris Backmeyer, 3, of Kamloops gets a new kidney. (Photo: Lindsey Backmeyer/Facebook)

On the occasion of Ferris’s third birthday, her mother, Lindsey, posted an update on Facebook:

“Happy Birthday sweet girl!

“Ferris has officially completed all her transplant assessment and we will hear more about listing and what the next several months will look like next Friday.

“I am not able to donate and we learned that Pat (Ferris’s father) is not a blood match for Ferris. We are reaching out and spreading her story in hopes that we may find just the right kidney for her!

“Our consult with the surgeons went about as I suspected it would. They are wanting her to be even bigger. For her to transplant at the size she is now we would need the perfect-sized kidney for her little body.

“I’m anxious that this process might take a long time. Our first year on dialysis was hard. She was really sick. The past eight months have been great and I worry we will miss our transplant window. She is strong and ready now.

“Please . . . help us find a kidney for our sweet girl!”

——

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


Flu shots. Get them. Period.

What follows is from Interior Health’s website, under the headline 2019-20 Seasonal Influenza Campaign:

“Flu shots are safe, easy to get, and free for those at risk and their household contacts.

“The people at the greatest risk of influenza-related complications are adults and children with underlying health conditions, residents of nursing homes and other chronic care facilities, people 65 years of age and older, children under 60 months of age, pregnant women, and Aboriginal peoples.

“It’s important that those who have loved ones that are most at risk of complications from influenza get vaccinated. This will help to build a wall of protection around your loved one and reduce their chances of acquiring influenza illness.”

Get a flu shot. Every single year. Transplant recipients and others who are at risk will appreciate it.


If you are going to be in the Pittsburgh area on May 12, you may want to take in the MLB game between the Pirates and San Francisco Giants. It will be Organ Donation Awareness Night at PNC Park. A portion of ticket sales will go to support CORE.

From a news release:

“The Center for Organ Recovery & Education (CORE) is one of 58 federally designated not-for-profit organ procurement organizations (OPOs) in the United States. CORE works closely with donor families and designated healthcare professionals to deliver the gift of hope by co-ordinating the surgical recovery of organs, tissues and corneas for transplantation. CORE also facilitates the computerized matching of donated organs, tissues and corneas. With integrity and compassion, our goal is to bridge the gap between donor families, health care providers and transplant recipients so that we may forever transform lives.”

——

Teghan Simonton of triblive.com reported in mid-January that CORE “facilitated 661 transplants in Western Pennsylvania and West Virginia last year — an increase from 2018 by nearly 10 per cent.” . . . She added: “There were 253 deceased organ donors in the region, nearly 20 per cent more than in 2018. Of those, 198 donors were in Western Pennsylvania. That’s up from 2018, when there were 162.” . . . There were 226 living donors involved in transplants, up from 191 in 2018. . . . As of mid-January, there were 112,693 people in the U.S. waiting for transplants. . . . Simonton’s story is right here.

——

BC Transplant hasn’t released its 2019 numbers yet, but there is word of a record 2019 from the Universal Health Network (UHN), which is based in Toronto and bills itself as “one of the largest organ transplant centres in North America.”

In 2019, they did 201 kidneys, 202 livers, 209 lungs, 40 pancreas and 40 hearts. That adds up to 701 patients.

Checking on Ferris Backmeyer and Zach Tremblay, two young people dealing with kidney disease . . .

It’s time to check in with a couple of our favourite young people — Ferris Backmeyer and Zach Tremblay — each of whom is dealing with kidney disease and is in need of a transplant.

Both are regular visitors to B.C. Children’s Hospital. Ferris and her mother, Lindsey, have just returned to Kamloops from their most recent trip, while Zach and Jana have been in Vancouver for a few days now, and are likely to remain there for a while yet.

Lindsey and Jana both took to Facebook on Wednesday to update friends as to the latest happenings. Hopefully, these will provide some insight into what people have to deal with they as they and/or their loved ones deal with kidney disease.

——

Ferris, who is about to celebrate her third birthday, does peritoneal dialysis on a daily

FerrisJan2020
Ferris Backmeyer, soon to be three years of age, loves nothing more than to spend time drawing and smiling. (Photo: Lindsey Backmeyer/Facebook)

basis. She needs to gain weight, and maintain that weight, in order to have a transplant.

Here is a bit of what Lindsey posted:

“The take home from this trip is that she’s been managing pretty well from a dialysis perspective. Things are going well and our focus yet again seemed to be on growth . . . We have our wrapup from the assessment meeting with the transplant nephrologist Feb. 7. Our dialysis team is hopeful she will be ready to list/look into live donors by March.

“For the past few months we have seen audiology and ent each time we go down. Ferris’s hearing tests are abnormal. This took me by surprise as I’m fairly certain she can hear some stuff. She follows instructions and has conversations with us daily. However, I am starting to think that she likely can’t hear as well as we think and it’s likely why she isn’t speaking yet. And I mean no clear words . . . except no . . . and yah. She’s also increasingly frustrated that we don’t know what she’s saying (as she’s most definitely trying to talk) although learning some basic signs has helped with this.

“Anyway, they are taking it quite seriously and have put her on an emergent list and I’ve been told we will be back down likely within the next month for a hearing test done under general anesthetic and probable placement of tubes. After that, they will discuss whether she will need hearing aids. I’m hopeful that this might help her in the communication realm as we all know she is sooooo smart!

“She loves to draw and is practising her smiley faces. Her imaginative play is so incredible to watch. She will pretend her baby is hurt, sign for sad and then pull an imaginary Bandaid out of thin air and pretend to put it on, then say happy! She loves to dance and her favourite songs right now are ‘Me Too’ by Meghan Trainor and Dance Monkey.

“In just a couple short weeks, little miss will be 3 and I can’t wait to see how she grows!”

——

Lindsey ended her latest post with this:

“We also got to meet my friend Jana (Tremblay) and her kidney friggin warrior Zach!! Was by far the best part of this trip for me!! It was so nice to chat with people who are dealing with something similar to us! I hope to meet up with them again sometime soon, and hope even more that Zach gets the kidney he so desperately needs!!”

It is tremendous news that Lindsey and Jana finally met and you can bet that they will continue to communicate with each other. This kind of support is invaluable and is the reason why we started the Kamloops Kidney Support Group. Words can’t express the importance of being able to meet and talk with people who can relate to what you have dealt with and are going through.

(BTW, the KKSG’s next meetings are Feb. 8 and 12; we meet on the the second Saturday (9 a.m.) and Wednesday (10 a.m.) of each month.

——

Jana and Zach, who are from Robson, B.C., remain at B.C. Children’s Hospital as Zach, 16, is transitioned from peritoneal dialysis to hemo. On Wednesday, Jana posted:

“We have had a few big changes and a few tough days. Our boy is a rock star though, as always, and seems to be handling these things with courage and more grace than most adults would.

“Peritoneal dialysis is no longer working for Zach. On Friday, he had surgery to have a hemo catheter placed, and we will be transitioning over to hemo dialysis permanently until we can find his match.

“We have no time frame on coming home atm. We are just working to get him successfully running hemo, and to be a healthier him.

“I don’t have many more answers than that at the moment .

“Please keep him in your thoughts and prayers as we make this leap into the adult world of dialysis. We can’t move here for him to have treatment 3x per week, and the local dialysis unit in Trail is not connected to Children’s in any way, so our dialysis time here, and with our team, will come to an en . . . Bittersweet, but life.

“Please keep sharing his story in hopes it reaches the right set of eyes!”

——

If you would like more info on being a living kidney donor:

Living Kidney Donor Program

St. Paul’s Hospital

6A Providence Building

1081 Burrard Street

Vancouver, BC V6Z 1Y6

Tel: 604-806-9027

Toll free: 1-877-922-9822

Fax: 604-806-9873

Email: donornurse@providencehealth.bc.ca


“The Ministry of Health is seeking a contractor to build an organ and tissue donation registry, and it’s leaving its options open in case the province later adopts an opt-out donation model,” Arthur White-Crummey of the Regina Leader-Post wrote earlier this month. “Health Minister Jim Reiter revealed the government’s plans for an online registry in March of last year, signalling that the system should be up and running by the end of the fiscal year in April.

“The plan is now moving forward after a slight delay. The Ministry of Health posted tender documents Thursday seeking proposals to build the system. It is now hoping for the registry to be available to the public, “ideally,” by mid-June of this year.”

The complete story is right here.