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?

Ferris-061620-
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!”

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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


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.

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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


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.

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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


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



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.

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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.

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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



Years after kidney transplant, Ayres gets first NHL win in debut . . . Helps Hurricanes beat Maple Leafs on night to remember



If you are part of the organ transplant community, the Saturday night NHL game that had the Carolina Hurricanes meeting the Maple Leafs in Toronto really was one to remember.

You can bet that the NHL pooh-bahs won’t have found it overly entertaining, but it was . . . it really was!

After all, it’s not every night when you get to watch a 42-year-old Zamboni driver who has had a kidney transplant play goal in an NHL game. Not only did Dave Ayres, at the age of 42 years 194 days, tend goal, but he ended up with the victory, stopping eight of 10 shots as the Hurricanes won, 6-3.

Ayres became the second-oldest goaltender in NHL history to win in his NHL debut. The first? Lester Patrick, then the general manager and head coach of the New York Rangers, was in goal for a 2-1 OT victory over the Montreal Maroons in Game 2 of the Stanley Cup final on March 20, 1927. Patrick was 44 years and 99 days old. For the record, Patrick stopped 18 of 19 shots.

Ayres did set one NHL record as the oldest goaltender to win his regular-season debut. Hugh (Old Eagle Eyes) Lehman of the Chicago Black Hawks was 41 years 21 days when he won his first game in 1926-27.

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In our home, it all began when I saw the above tweet and words “kidney transplant” jumped off my computer screen.

I hadn’t yet flipped over to the NHL game in Toronto. However, after seeing this tweet, I immediately changed the channel. I was just in time to see Carolina G Petr Mrázek go down in a collision with Toronto F Kyle Clifford at 11:19 of the second period. The Hurricanes had lost G James Reimer at 3:07 of the opening period in a collision that resulted in Mrázek entering and Ayres having to get into his goaltending gear.

But now Mrázek was hurt and the rest, as they say, became history.

If you didn’t see the game, the Hurricanes held a 3-1 lead when Ayres entered, and they quickly made it 4-1. But the Maple Leafs scored goals on their first two shots on Ayres as the Hurricanes struggled to get to the intermission with a lead.

They were able to do that, then scored two early third-period goals to stretch their 4-3 lead to 6-3 and give Ayres some breathing room. Ayres was steady in the third period, while his new teammates really shut down the home side, much to the dismay of the crowd.

During the second intermission, I headed for the Internet to find out what I could about Ayres. I didn’t care about his hockey-playing background; I wanted to know about his kidney issues.

I found this from St. Michael’s Hospital in Toronto, from the Nov. 18, 2019, edition of The Globe and Mail:

“Like many kids growing up in Canada, Dave Ayres wanted to play hockey in the NHL.

“He was 25 and at a hockey training camp when his feet became so swollen he couldn’t put on his skates. Then one day while driving, he became so dizzy he nearly hit someone.

“It was Thanksgiving weekend when he ended up in the ER. His kidneys were working at 15 per cent capacity and he had to start dialysis immediately. Three days a week, four hours at a time, for the next seven months.

“Then in May, he came to St. Michael’s Hospital’s Kidney Transplant and Care Centre, where he received a new kidney, courtesy of his mom.”

A native of Whitby, Ont., Ayres underwent a kidney transplant in 2004. After donning gear for an outdoor practice with the Maple Leafs just last month, he told Lance Hornby of the Toronto Sun about those days:

“I told the doctor at St. Michael’s Hospital I needed to get back because I was supposed to go to the (Central Hockey League’s) Laredo Bucks. They said ‘we’ll try our best’ and my Mom (Mary) was a match. They ended up moving me along pretty quick (for the operation), about a year after I got sick.”

In his other life, Ayres drives the Zamboni at the Coca-Cola Coliseum, the home of the AHL’s Toronto Marlies. He also has been on the ice with the Marlies and Maple Leafs on occasion, as he was for the outdoor practice.

In yet another twist to this story, Ayres told media after Saturday’s game that he is scheduled to practice with the Maple Leafs on Monday. I am thinking that practice session just might draw a bit of press coverage.

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Here’s more from St. Michael’s Hospital:

“Dave’s case is not unusual, but he was one of the lucky ones. In Canada, one in 10 people has kidney disease — that’s the population of Vancouver and Calgary combined. It’s a chronic disease with no chance of remission. And it’s considered a silent killer because there are few symptoms — apart from the swelling and dizziness, like in Dave’s case, there can be fatigue, chills, back pain, itching — but it’s still difficult to detect. With an aging population, increas­ing rates of obesity and high blood pressure, and an epidemic of diabetes (the leading cause of kidney disease), the numbers are only going up.

“Some people can live with kidney disease for years, and many do — when it’s caught early enough and treated properly. But in too many cases, the kidneys fail, leaving only two options: dialysis or a kidney transplant. “Dialysis can take over a person’s life. And it’s not a life saver: half of patients 65 years of age and older starting dialysis today will not be alive in five years. And while transplant is by far the best solution, 3,600 Canadians are on the waiting list. It’s not a permanent fix either: a kidney from a deceased donor will last on average 10 to 15 years, and from a living donor 15 to 20 years.”

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Shortly after game’s end, the Hurricanes announced that t-shirts with Ayres’ name and number (90) already were available via their online shop and that a portion of the proceeds will be going to a kidney foundation.

As I have written about here previously, kidney disease isn’t going away. There isn’t a cure — a transplant really is just a form of treatment. But what is needed more than anything is more education. People from all walks of life need to understand that while there isn’t a cure, you can have kidney disease and get on with your life; if you are fortunate enough to have a transplant, you don’t have to forget about your dreams.

Dave Ayres is proof of that.


Roy Cooper is the governor of North Carolina:

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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