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

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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.



Keep on social distancing and washing your hands . . . let’s not surrender the ground we have gained!

Reminder

A dear friend of ours ventured into a large grocery store on Saturday. Considering the times in which we are living, he didn’t have a pleasant experience.

Afterwards, he wrote:

“Question: With 95 new cases of COVID-19 in B.C., who is policing the social distancing in the retail sector? I was in a major outlet today. They were letting everyone in. No social distancing except at checkout. What the heck? This pandemic, in Kamloops especially, is going to get out of hand. Makes me want to hurl canned goods to protect my six feet.”

That drew this response from someone else:

“Relax . . . and try not to pay too much attention to the CBC or Global news. The numbers in the Interior are relatively tiny and frankly the possibility of you running into someone who is infected are somewhere between zilch and zero. Social distancing does absolutely nothing if no one is infected. If you’re that worried about it just stay home and have your groceries delivered.

“There are currently 150 cases in the entire Interior of which 90 are recovered. So if you spread those 60 people out over the entire interior including Kamloops, Kelowna, Vernon, Penticton, etc. etc. And since they have tested positive it’s highly unlikely they’re out shopping.

“The grocery store I visited was doing the distance thing but because the checkout had small lineups that went back into the aisles because of the 6 ft rule it made keeping distant almost impossible if you wanted something in that aisle. They’re trying but really it’s becoming a bit much, worrying about how many feet away you are from the next person.”

These are the people who make we want to puke. They really do.

This person writes: “Social distancing does absolutely nothing if no one is infected.”

That’s exactly the point. We don’t know who is infected. We aren’t testing everyone, and there apparently are people walking around who have the virus and don’t know it. That is why we social distance, along with the fact that we don’t want people coughing or sneezing all over us.

The responder to our friend also wrote: “. . . the possibility of you running into someone who is infected are somewhere between zilch and zero.”

Look, when I buy a lottery ticket, I want to win. When it comes to this virus, that’s a lottery I don’t want to win, and the odds being “between zilch and zero” is still too high.

Look, social distancing works . . . social distancing and properly washing our hands. So let’s keep doing it so that we don’t piss away everything we’ve done to get to this point.

——

After this shopping trip, our friend also suggested: “What’s worrying me is people’s disregard for the rules and especially those wearing masks who waltz around the stores like they are indestructible.”

I have gotten to the stage where when I see someone wearing a mask I think: 1. Does that mean the person is infected?, and, 2. Is that person going to cough or sneeze?

So I try to steer clear of those people.

——

You will recall that Stephen Gillis, a Vancouver minor hockey coach, underwent a kidney transplant on Feb. 18.

This means that he, like so many transplant patients, has to take anti-rejection medications. These meds suppress a person’s immune system in order to keep his/her system from rejecting the organ that, after all, is a foreign object in a new setting.

Having a compromised immune system means one is much more susceptible to illness and infections than the average person.

And that’s why it is so frustrating to see the way some people carry on during this COVID-19 pandemic.

Here’s a couple of recent Facebook postings by Gillis . . .

“So did the restrictions change in BC or Vancouver? Cause there is currently 8 guys playing soccer, all beside each other, at the park near my house where I take my dog. . . . Hey A-holes, I haven’t been distancing and isolated for almost 40 days so on the first nice day you can play footy. . . . I won’t be surprised if there is another spike, because many people are acting like the pandemic is over.

“The amount of people who don’t keep their distance lately is insane. They’re all out strolling and walking right by me. Do I have to wear a sign or a scarlet letter to let them know I am immuno-suppressed and if I get COVID-19 I could very well die? I know people who have passed or had people passed. You call 311 and in very Vancouver fashion you get a msg that neither the city nor police will enforce it. Then what’s the point?”

My wife, Dorothy, received a kidney more than six years ago. She takes anti-rejection meds twice a day, so lives under the same conditions as does Stephen.

Dorothy hasn’t been in a grocery store in well over a month; you have no idea how hard this is on her because she loves to shop for groceries, which means browsing and taking her time. These days, we order groceries online and then we pick them up. If an item or two is unavailable, I will make a quick run into a small store, get what we need and get out.

Also, don’t forget that when restrictions are loosened and things start to open up again, Dorothy and Stephen — and thousands of others like them — will be among the last to leave their homes in search of some sense of a new normalcy.




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



Kidney walks go virtual on June 7 . . . Western branches get together on Walking the Block

On the off chance that you haven’t seen this five-minute video that has been making the rounds, it just might lighten your day . . . It’s from M*A*S*H and it’s a lot of fun . . . 


If you aren’t aware, kidney walks in Saskatchewan, Alberta, B.C. and the Yukon have been cancelled for 2020. That doesn’t mean that they have completely disappeared.

No way!

Instead, they all have gone virtual, and we’ll be Walking the Block on June 7 and would like you to join us.


It seems like it was a thousand years ago, but it really Walking thwas less than two months ago — Feb. 22 — when David Ayres came out of the stands to play goal for the Carolina Hurricanes in a 6-3 victory over the host Toronto Maple Leafs.

Ayres, a kidney transplant recipient, now is helping raise funds for the Kidney Foundation of Canada.






Kidney stone saved father’s life. . . . Visit the Kidney Community Kitchen. . . . Stevie Wonder to have transplant

It was a humbling experience to sit in my recliner on Friday evening and again on Saturday and hear from so many people via Twitter, email, text, Messenger, etc. As I sat and pecked away on my laptop all those evenings, it was easy to forget that there actually were folks out there who would be reading whatever it is that I was writing.

Thank you all so much for the kind words. They won’t be forgotten.

But considering the direction that I am taking this site, one note stood out from all the rest. Here is part of it . . .

“Best of luck with the new focus. It does hit a little close to home because three weeks ago my 78-year-old father went to the hospital at my urging to have a kidney stone checked.

“In the process, they found a tumour on one of his kidneys — fortunately, it’s early enough that he’ll be having surgery at the end of this month to have the tumour — and hopefully just a very small portion of the kidney — removed.

“It’s often not a stroke of luck to have a kidney stone, but in this case it was because, if not for that, the tumour wouldn’t have been found until it was too late.

“As the doctor told him, the kidney stone saved his life.”

And then there was the email from a WHL insider that included this:

“I am excited to continue to read your work as a kidney patient who is beginning kidney failure.”


Some food for thought from the Kidney Foundation of Canada/B.C. & Yukon Branch. . . .

One in 10 Canadians live with kidney disease or are at risk – most are unaware of this. . . .

You can lose up to 80 per cent of your kidney function before experiencing symptoms. . . .

As of December 2018, there were 665 people in B.C. waiting for (an organ) transplant, with 528 of those being kidney patients. In 2018, 335 kidney transplants were performed in B.C.


It stands to reason that diet is of utmost importance to folks who deal with kidney disease of one type or another. . . . With that in mind, you should be aware of the Kidney Community Kitchen, a creation of the Kidney Foundation of Canada. The tweet below highlights Classic Hamburgers and the recipe is available by following the link. . . . At the site, there also is an areas that allows you to browse recipes by meal type. Check it out.





It was over a month ago when Stevie Wonder informed concert-goers in London, England, that he is scheduled to undergo a kidney transplant late in September. Yes, he said, a donor has been found.

——

Little is know about what got Stevie Wonder to the point where he needs a kidney transplant. He made the announcement in London to quell rumours about his health, but there don’t appear to have been any statements made since then.

Nina Shapiro, who writes about health-related issues, has more right here.


If you’re new here, Dorothy, my wife of more than 47 years, has had a kidney transplant and her immune system now is compromised. There are a lot of people walking around out there who are just like her, which is just one more reason why immunization is so important.