Julie: ‘Getting down to crunch time . . . Honestly, it’s pretty scary’ . . . She needs a kidney. Are you able to help?

When you are living with kidney disease and are waiting and hoping for a transplant, it oftentimes can feel like time is running out.

While trying to get through your daily life, you have the spectre of dialysis hanging over your head. You know that the best-case scenario for you is a transplant before you need dialysis, and all the time you know that if that doesn’t happen you will end up on dialysis.

That is what’s going through your mind in what used to be ‘normal’ times. These days, the pandemic adds even more stress to your life.

That’s the situation in which Julie Dodds of Kamloops finds herself. She has a genetic kidney disease — Medullary Kidney Disease Type 1. In August, she turned to Facebook as she began a search for a living donor. She and her family — she is married with three young sons — have yet to find that donor. And she is moving ever closer to dialysis.

Here are some of her thoughts from a Facebook posting on Saturday:

“Getting down to crunch time. My kidney function as of (Friday) has my GFR at 16. That means I’m going to get the ‘what type of dialysis do you want’ talk very soon.

“This pandemic obviously shut down all the donor testing for a couple months but happily it’s been starting back up and I have a virtual appointment with the Vancouver doctors in a couple weeks.

“I don’t know the state of donors or matching. I don’t know if I’m going to last long enough to get a kidney match before having to do dialysis. I don’t know if COVID-19 is going to flare up again enough to shut it all down again. Honestly, it’s pretty scary to think about doing dialysis and where things are gonna go in the next few months.

“Thank you to everyone who is frequently checking in on me. I feel tired, achy and occasionally stressed, but most of the time life is just going on as normal.

“Trying to imagine what life is going to look like in the next year is a bit much so taking it one little step at a time.”

Julie’s GFR (glomerular filtration rate) of 16 means that she has Stage 4 kidney disease. If your GFR falls to between 30 and 15, it’s Stage 4 and a transplant or dialysis is looming. When the GFR slides below 15, the person has kidney failure and it’s time for a transplant or dialysis — either hemodialysis or peritoneal. In adults, a normal GFR would be 90 or higher, although between 89 and 60 can be seen as normal in some people, especially those over 60 years of age.


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


There is some good news for people in B.C. who are awaiting kidney transplants.

Michael Coyle of Coquitlam underwent a transplant on Friday in Vancouver.

Coyle, who has polycystic kidney disease, had a date set prior to the pandemic coming along, and kept waiting for it to be postponed because of the pandemic. In the end, it was postponed — but only for one day.

Coyle has been with Coquitlam Search and Rescue for 20 years. His donor, Jody, is the wife of another SAR member. 

Monika Gul and Lisa Steacy of News 1130 in Vancouver have more on Coyle right here.

Three months ago, Coyle told his story to the Tri-City News and, if you haven’t seen it, it’s really worth a read. It’s all right here.


Elsa and Robert Garza share the same birthday in the same year. They were born in the same hospital. Now he has given her a kidney in a transplant that was done before Elsa had to go on dialysis. . . . There’s more in a story right here from ABC-7 in Austin, Texas.

On Friday, Zack Hedrick posted this on Facebook:

“Got an update that Robert and Elsa Garza’s kidney transplant surgery went well!! Both are stable and recovering!

“Robert donated one of his kidneys to Elsa, who was close to going on dialysis because of an autoimmune disease which attacked her kidneys. Elsa was in stage 5 renal failure.

Their surgery was delayed a couple months due to COVID-19, but went off without a hitch earlier this morning!”


With our annual Kidney Walk having been cancelled, my wife, Dorothy, is raising funds in support of a ‘virtual’ walk that is scheduled for June 7. All money raised goes to help folks who are dealing with kidney disease. . . . You are able to join Dorothy’s team while putting a smile on her face by making a donation right here. . . . Thank you.



Friends waiting for kidney transplants forced to wait even longer by pandemic . . . We thought three were getting close to getting THE phone call

The Kamloops Kidney Support Group, which used to meet twice a month, hasn’t held a get-together since March 11. And we don’t have any idea when we next will see each other.

Look, the novella coronavirus is horrible, absolutely terrible, but, gee, it’s timing could have been better, at least for a few kidney friends.

Prior to the arrival of the virus and everything it brought with it, we had hoped that three of our regulars— each of them battling kidney disease — were nearing an eagerly awaited new chapter in their lives.

Two of them are doing peritoneal dialysis at home, meaning they hook up to a unit known as a cycler that performs a fluid exchange while they sleep. This procedure takes about eight hours every single night. There aren’t any nights off.

The other person is doing hemodialysis, a procedure that calls for three visits a week to the dialysis unit at the local hospital, with each run taking about four hours.

Two months ago, when our group last met, all three were alive with nervous anticipation as they looked forward to impending medical appointments in Vancouver. The medical community is extremely tight-lipped when transplants hang in the balance, and rightfully so, but we all were feeling (hoping?) that these meetings meant that the end of depending on a machine to keep them alive was nigh.

Then came the coronavirus and cancelled appointments, and, yes, disappointment. And now, with organ transplants seemingly on hold, at least for the short term, it is back to the waiting game.

But there isn’t a kidney patient out there who hasn’t had to deal with adversity and who doesn’t live one day at a time.

These friends also have to deal with the fact that they have weakened immune systems so are high-risk at the best of times, never mind when something like this coronavirus may be lurking around the next corner.

My wife, Dorothy, was one of the lucky ones, having had a kidney transplant on Sept. 23, 2013. Now she takes anti-rejection medications twice a day. These meds stop her body from rejecting the kidney that really is a foreign body making a home inside her.

But those same life-saving meds leave her with a compromised immune system, so, yes, we are extra careful these days. We order groceries online and pick them up. We get meat from a butcher shop by phoning in an order and picking it up. We’ve ordered wine online . . . and jigsaw puzzles . . . and crossword books . . . and on and on.

Meanwhile, Ed Warkentin of Oliver, B.C., drives to Penticton three times a week to undergo hemodialysis. His wait for a new kidney has been ongoing for years and he hasn’t any idea as to what lays ahead.

Annick Lim of Penticton underwent a kidney transplant more than 20 years ago. She has been self-isolating for more than 50 days and, although she has been called back to work, she can’t go because of her compromised immune system.

She also is dealing with something with which my wife has had to come to grips. Nephrologists monitor transplant patients through regular bloodwork. As long as you’re feeling OK, better not to venture into such situations these days, they both were told.

Chelsea Powrie of castanet.net has more on Warkentin and Lim 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


With our annual Kidney Walk having been cancelled, my wife, Dorothy, is raising funds in support of a ‘virtual’ walk that is scheduled for June 7. All money raised goes to help folks who are dealing with kidney disease. . . . You are able to join Dorothy’s team by making a donation right here. . . . Thank you.


In a perfect world, every single person in need of a kidney transplant would get one pre-emptively, meaning before he or she had to experience dialysis. So why aren’t there more pre-emptive transplants? . . . Jim Myers, a National Kidney Foundation advocate in the United States, writes about that right here.


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

Ferris
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.




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.






Welcome back! Zach and his mother finally are home . . . Green Shirt Day moves online

ZachHome
Zach Tremblay and his mother, Jana, were riding high on Saturday as they headed home for the first time in almost three months. (Photo: Jana Tremblay/Facebook)

There was some good kidney news on Saturday as Zach Tremblay and his mother, Jana, headed home to Robson, B.C., after spending almost three months in Vancouver.

Zach, who turned 17 while they were living at Ronald McDonald House, was transitioned from peritoneal dialysis (PD) to hemodialysis while in Vancouver.

Zach had been doing PD at home in Robson, which is across the Columbia River from Castlegar. However, as 2019 wound down there were some issues and his medical team decided that PD was losing its efficiency. So they changed him over to hemo.

Unable to do hemo at home in Robson meant that he would have to travel to Trail and the Kootenay Boundary Regional Hospital there. However, the unit there wasn’t able to free up room until now. Zach will be travelling three times a week to Trail for hemo, with his first run on Tuesday.

Jana announced their departure via Facebook:

“So this is happening!! Homeward bound with Dad!! Trail is ready for Zach so we are home to stay for now. Thank you all for your love and support over the past few months.

“We appreciate each and everyone of you.”

Now . . . if only we can find a kidney for Zach.

——

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





Happy birthday, Zach, and here’s to many more . . . Robson teen just keeps on smiling . . .

Cake

Zach Tremblay turned 17 on Wednesday.

Celebrate?

Well, he was in Vancouver. But, of course, a lot of places for celebrations in the big city are shut down or takeout only.

Oh, and he also had to spend part of his day doing dialysis.

Run
Zach Tremblay had to interrupt his birthday celebration on Wednesday in order to do a dialysis run. (Photo: Jana Tremblay/Facebook)

But there still was cake and goodies and lots of fun at Ronald McDonald House.

Zach is from Robson, B.C., which is across the Columbia River from Castlegar. He and his mother, Jana, have been in Vancouver since early in January. He spent some time in B.C. Children’s Hospital, where they transitioned him from peritoneal dialysis (PD) to hemodialysis.

Now that he’s on hemo, he won’t be able to do dialysis at home, something he did while he was doing PD.

The reason he and his mother haven’t been able to return home is that Zach will have to travel to the Kootenay Boundary Regional Hospital in Trail to do hemo, but . . .

“We were told Trail doesn’t accept patients who are not 17 years old plus a day,” Jana told Gord McIntyre of Postmedia in February. “Zach turns 17 on March 18.”

The dialysis unit in Trail has eight chairs and there apparently have been discussions about adding a ninth, which would ease some of the load there.

Of course, in a perfect world, Zach would have gotten word on his birthday that a donor had been found. As it is, we still wake up every day hoping that a match has been discovered.

In the meantime, Zach and Jana remain in Vancouver. But, as Jana points out, considering the situation in which we find ourselves these days that may not be a bad thing.

“We are thinking he’s safer here for now where he is still child priority,” she told me. “Going home means doing dialysis in a unit of older people mostly and it’s not the safest place for him to be. Here he gets good dialysis and is near a children’s hospital as this virus spreads.”

——

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




Remember that you don’t have to be a match to specific recipient in order to be a kidney donor . . .


Eight days after being the donor and recipient of a kidney transplant at Vancouver General Hospital, Michael Teigen and Stephen Gillis appeared on CTV Morning Live on Wednesday.

Gillis, the recipient, and Teigen both are doing well and are walking billboards for the entire process.

The conversation — and this is really good stuff — is right here.


The Children’s Organ Transplant Society issued this release on Tuesday:

“We have been receiving a lovely number of messages asking about how to be tested as a living kidney donor for Zach Tremblay. Thank you to our community for spreading the word! However, as a charity we cannot provide confidential medical information about Zach’s history or present condition, as well as any other transplant children. Please know that we would love to direct you to the right place, but cannot answer questions about Zach’s personal health. If you would like to apply for living donation, please contact St. Paul’s Living Donor Program.”

So here’s the deal . . .

You don’t have to be a match to Zach if you are interested in helping him. If you aren’t a match, you are able to help him through the Living Donor Program. If you were deemed to be an eligible donor via that program, you would donate a kidney to someone else, quite likely a stranger, but on the condition that Zach got a kidney.

That is exactly how my wife, Dorothy, received a kidney more than six years ago. Her best friend donated a kidney through the Living Donor Program at St. Paul’s Hospital in Vancouver. That kidney went to a stranger, while Dorothy received a kidney from another stranger.

So remember . . . you don’t have to be a match in order to help Zach, a 16-year-old from Robson, B.C., who has been in Vancouver since early January. He has transitioned from peritoneal dialysis to hemp-dialysis, but won’t be going home until there is room for him in the dialysis unit at the hospital in Trail.

——

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


OrganDonation