Know someone living with kidney disease? Don’t be afraid to talk to them about it . . . Military comes to the rescue in Newfoundland

TransplantLife

Please take a look at the above graphic and read the six items.

Something one often hears when chatting with someone who is dealing with kidney disease or has had a transplant is this: A lot of people, including family and friends, don’t understand my situation.

Delve a bit further and you will discover some level of frustration because family and friends haven’t asked questions or done much, if any, research, so have little comprehension of what it means to have kidney disease or to have someone else’s organ in your body.

It seems there are people who don’t understand that dialysis, either hemo or peritoneal, keeps those with kidney disease alive. Without dialysis, it would be all over in a hurry.

There also are people who seem to think that once a person has a transplant, well, life simply will go on uninterrupted. Unfortunately, that’s not how it works.

Hey, don’t get me wrong. A successful transplant allows an individual to go on living without having to rely on a machine via dialysis. The return to freedom after having been dependent on a machine for a long time is wonderful. But there are anti-rejection medications that have to be taken, in most cases twice a day. There are side effects, too, all of which are explained during the long process leading up to a transplant. So then it becomes a case of waiting to see if any of them — or, rather, which one or ones — will have an impact on you. Yes, there is mental anguish involved, and stress, lots of stress.

There are regular blood tests, and regular visits to a renal clinic.

All of this is to say, as I have written before, there isn’t a cure for kidney disease. Once you’ve got it, once it has taken root, that’s it. There’s no getting rid of it, not even with a transplant.

If you have a family member or a friend who is dealing with kidney disease or has had a transplant don’t be afraid to ask questions. Don’t be afraid to ask about what they are living with and how they are dealing with it.

They will appreciate your interest and your understanding.


The Manitoba government has come up with $300,000 in order to create more access to dialysis services in the province. . . . For example, the Dauphin Regional Health Centre will end up with 12 more spaces for patients, along with two more renal staff members. . . . When it’s all done, more than 95,000 treatments a year will have been added to a number of communities.


We’ve all seen the pictures and videos that were posted to the Internet during and after that gigantic, humongous snowfall in Newfoundland last weekend. And I’m sure we gasped and maybe even chuckled at some of them. . . . When officials called in the military, some people may even have wondered why soldiers were being given shovels. . . . Well, in the case of Carolann and Chris Harris of St. John’s, the soldiers may have saved a life. . . . Chris underwent a kidney transplant on Dec. 5; Carolann was his donor. . . . So while they both were back home, neither had medical clearance to do anything like shovel snow, and their 14-year-old son did his best, but, hey, well, you saw the pictures and the videos. . . . They asked the city for help on Monday night and woke up Tuesday to find six soldiers helping out. . . . Noah Laybolt has that story right here.


“For most of my life,” Sam Trejo writes in the Los Angeles Times, “I’ve been a model of good health. At 17, I became a certified firefighter, and, at 20, I biked from Texas to Alaska. But last month, at 25, I spent a week in bed recovering from surgery, with fresh incision holes in my abdomen, because I made an unusual choice. I donated my left kidney to someone who dearly needed one — someone whom I don’t know and have never met.” . . . Trejo is a doctoral candidate in sociology, economics and education at Stanford U. . . . So why did he decide to become a living donor? . . . His story is right here and it is well worth giving it a read.



Former NFL defensive POY needs kidney . . . Campbell River volunteer honoured . . . How do vaccines work?

If you are a sports fan, especially a football fan, you will remember Albert Haynesworth, a big, bad pass-rushing maniac who was the NFL’s defensive player of the year in 2008 while with the Tennessee Titans. . . .These days, Haynesworth does hemodialysis three times a week five hours at a time, starting at 6:15 a.m. . . . “He shares this cramped space with people from all backgrounds: white and black, young and old, successful and otherwise . . . diverse but depressingly the same, in that they each desperately need a kidney,” writes Greg Bishop of Sports Illustrated. “Haynesworth’s doctors have made that clear to him. Even this mountainous man, once as feared as any in football, finds himself worrying about dying young, about all the graduations and weddings and milestones he would miss.” . . . A friend is well along in the testing process, and Haynesworth just may get that kidney this year. . . . Bishop’s complete story — it’s a good one and it’s a long read — is right here. . . . (Thanks to long-time friend Jack Finarelli, aka The Sports Curmudgeon, for passing along the link to this story.)


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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 in late November when Shawn Logan of Postmedia put together a story on how an organ gets from a donor to a recipient. It’s a good story and, if you haven’t seen it, it’s worth a look. . . . Logan opens the story: “A critical window opens for only a short period of time when a family makes the life-changing decision to allow a dying loved one to become an organ and tissue donor. The window can only open during two types of deaths, which allow for doctors to harvest vital organs and tissue that can be used to save or improve the lives of others. The first death is one in which the brain stops functioning (neurological death), but other vital functions remain operative. The second is cardio-circulatory death, in which life is not sustainable without a ventilator.” . . . The complete story is right here.

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Meanwhile, Shraddha Chakradhar of statnews.com wrote an interesting piece this week on a major development in the area of heart transplants in the U.S. “A new method of ‘reanimating’ donor hearts from those who have died from cardiac failure is currently being tested in the U.S.,” Chakradhar reports, adding that this program “may soon ease” the burden on the more than 250,000 Americans who are at the end stages of heart failure. . . . “Last month, a team at Duke University was the first in the U.S. to perform the procedure in an adult as part of a multicenter clinical trial,” the story continues. “And just last week, Massachusetts General Hospital in Boston and the University of Wisconsin in Madison, which are also a part of the trial, reported their first such transplant.” . . . This enlightening and newsy story is right here.







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.

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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.

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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!”

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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.





Yukon politicians need to do better with dialysis file . . . More on Zach Tremblay . . . Fraser Valley hotdog king makes great decision

Allow me to throw a few words in the direction of politicians in the Yukon: Chronic Kidney Disease (CKD) isn’t going away. In fact, as time goes on medical advancements are going to mean more diagnoses, meaning CKD is only going to take a bigger and bigger bite out of your population, as it is everywhere else. . . . In the medical community, it is generally accepted that one in 10 Canadians is living with kidney disease or is at risk, and most of those people are unaware of their situation. . . . I would suggest that Yukon isn’t a statistical anomaly, so I also would suggest that the fact there isn’t a community dialysis unit in your area of our country is something of an embarrassing tragedy. . . .

If you are a regular here, you will be aware that Terry Coventry, 74, died in Whitehorse General Hospital on Jan. 3. He had kidney disease and was doing hemodialysis in Vancouver until, plagued by loneliness, he chose to return home even though he knew he was facing certain death.

He invited media to visit with him in hospital in Whitehorse on Dec. 10, telling them: “I’m not afraid (of dying). I’m just kind of pissed off that there’s nothing they can do for me . . . I sure hope it’ll help the next person, you know? For whatever reason, we should have a dialysis here at the hospital. We don’t.”

Jackie Hong of Yukon News has reported that Coventry’s sister, Kelly, is picking up the torch that her brother had been carrying.

“Terry has gone peacefully and the way that he wanted to, and that gives me a great deal of joy,” Kelly told Hong earlier this week. “It also gives me a great deal of joy knowing we were able to kind of tick all of the boxes that he wanted to get accomplished before his passing, and the only thing left is getting a hemodialysis machine here in the Yukon. . . .

“The success is going to have a hemodialysis machine here in the Yukon so that people don’t have to experience what he experienced and when that happens, and I say when, not if . . .  then Terry’s last wish will be completed.

“Hopefully things will move quickly once everything is settled and I can sort of get the push on again.”

Here’s hoping that there are politicians in the north country who are paying attention and prepared to make a difference.

Hong’s complete story is right here.


Zach Tremblay and his mother, Jana, finally got to Vancouver on Monday. You will recall that they are from Robson, B.C., and that Zach, 16, is in need of a kidney transplant. Late last week, he began having some issues and the decision was made to get him to

ZachTremblay
Zach Tremblay is 16 now, and he still needs a kidney. The phone numbers will get you to the Live Donor Exchange Program at St. Paul’s Hospital in Vancouver.

Vancouver so his medical team could take a look.

Just to complete the story that began then. . . .

Unable to fly out of Trail, B.C., due to inclement weather in various locations, Zach and Jana ended up making the trip to Kelowna via ground ambulance. Jana posted late Sunday night/early Monday morning:

“Kelowna — safe and sound — BUT, and that’s a mighty big butt, there’s nothing nice to be said about travelling facing backwards and not being able to see where we were going. 🤢

“Settled in for the night , and onward to Van tomorrow

“We truly love you all.”

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On Monday morning, she posted:

“We are still in Kelowna. We woke to a huge snow storm and I don’t think planes are moving right now. His BP was pretty stable overnight and he’s resting well . . . no idea when we will get to Van but eventually we will.

“Thanks for staying on this crazy ride.

“Love to you all.”

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Later Monday, she wrote:

“We have FINALLY arrived in Van — no real updates — he’s getting the care he needs and we are where we need to be for now.

“We thank you all for the love and support and for just loving our boy and our family.

“#TeamZach is one of a kind of and we are blessed to have each and every one of you a part of it.”

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On Thursday night, Jana told me that Zach’s medical team has decided that peritoneal dialysis “isn’t working well for him anymore and he will be having a hemo catheter placed” on Friday.

Once Zach’s situation stabilizes, he and Jana will return home, after which his care will be placed in the hands of the staff at a hospital in Trail, B.C., which is about 30 km south of Robson.

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If you are interested in being a living kidney donor, perhaps to help Zach or anyone else in need of a kidney, 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


“Skully White is known around Abbotsford as a charitable guy,” wrote Vikki Hopes of the Abbotsford News. . . . Hopes then went on to chronicle many of White’s contributions to the community and, believe me, there are a lot of them. . . . Now, though, Hopes is taking charity to a whole new level. . . . “He’s donating a kidney to one of his customers, Tim Hiscock,” Hopes wrote. . . . Hopes’ story of how this all came about is right here.




Zach’s search for kidney continues . . . Coventry hoped his death will bring change to Yukon

Gord McIntyre of Postmedia chatted with Jana Tremblay the other day and the result — a story on Jana’s son Zach — was in Vancouver’s two daily papers on Friday. . . . The hunt is on for a kidney for Zach, 16, who spends 14 hours a day undergoing dialysis. The Tremblays live in Robson, B.C., just across the Columbia River from Castlegar. . . . McIntyre’s story is right here.

I first wrote about Zach in October. That piece is right here.

NOTE: Just as I posted this on Saturday morning, Jana Tremblay was putting a note on Facebook . . .

“Because life just likes to keep us on our toes, we are currently sitting in Trail Hospital, awaiting air transport to Vancouver. Zach has very high BP , and needs some TLC from his team.
And just to throw an extra kink into things , weather in Van has our flight on hold … that’s a switch 😜
Keep good thoughts for our boy.”

We’re thinking about you, Zach.


Terry Coventry lived in Whitehorse for 61 years; he died of kidney failure in Whitehorse on Friday at the age of 74. . . . Coventry died four weeks after a final dialysis treatment. . . . He had ended up at St. Paul’s Hospital in Vancouver in July and spent four months there. With dialysis treatment unavailable in Whitehorse and not wanting to relocate to Vancouver, Coventry returned to the Yukon city to die.

On Dec. 10, Coventry called reporters to his bedside in Whitehorse General Hospital. “Maybe my death, and my complaint here, will trigger something in the government so the next guy coming along can be here and won’t be shipped down south,” Coventry told reporters. “I’m going to die. That’s it . . . I’m not afraid, I’m just kind of pissed off.”

Steve Silva of CBC News has more right here.

Gabrielle Pivonka of the Whitehorse Star was among the reporters at Coventry’s bedside on Dec. 10. Her story, which is right here, helps to explain why hemo-dialysis isn’t available in Whitehorse.


Those involved with The Kidney Project feel that they are moving ever closer to eliminating the need for dialysis. . . . The team reported in November that U of California — San Francisco “scientists have successfully implanted a prototype kidney bioreactor containing functional human kidney cells into pigs without significant safety concerns. The device, which is about the size of a deck of cards, did not trigger an immune reaction or cause blood clots in the animals, an important milestone on the road to future human trials.” . . . Team member Shuvo Roy, PhD, said in a news release: “This is the first demonstration that kidney cells can be implanted successfully in a large animal without immunosuppression and remain healthy enough to perform their function. This is a key milestone for us. . . . Based on these results, we can now focus on scaling up the bioreactor and combining it with the blood filtration component of the artificial kidney.” . . . The complete news release is right here.




Picard looks at the Chopped Livers . . . Toronto reporter details her kidney transplant

OrganDonation


André Picard, a healthy reporter and columnist with The Globe and Mail, had an interesting story on Saturday. The print story was headlined ‘Giving life, and a bit of liver, to a stranger,’ while online it carried this headline: ‘Meet the Chopped Livers — altruistic Canadians who have donated a part of their livers to strangers to save lives’ . . . The story mostly deals with people who have chosen to donate a piece of their liver to those in need. . . .

Picard’s story included this:

“Given the dire shortage of organs for transplant — there are 3,150 Canadians waiting for a kidney and 527 waiting for a liver — public appeals are on the rise.

“That makes many clinicians and ethicists uncomfortable. They worry that desperately needed organs will go to those with compelling stories rather than those most in need, as illustrated by the case of Eugene Melnyk, the owner of the Ottawa Senators, who received a liver transplant in 2015 after a public appeal.

“More than 500 people offered to donate a part of their liver to Mr. Melnyk, and 20 of them actually continued with the process to become living donors.”

After the response to Melnyk’s appeal in 2015 and the ensuing successful transplant, I sometimes wondered how many of the potential donors had gone ahead even after not being selected to help him. Now I know.

Picard’s story is right here.





We’ll be back next year! Happy New Year!!!

Psst! Have you heard about the “Christmas kidney?” . . . Psst! Don’t forget a flu shot isn’t about you

If you haven’t heard Chris Rea’s Driving Home for Christmas, here it is and it’s a good one . . .


We are closing in on Christmas, so why not a story about a “Christmas kidney,” a story that really is worth a listen?

Jason Armstrong of West Vancouver and his family are more than ready for Monday. Yes, he is going to get a new kidney on Monday, two days before Christmas Day. . . . Armstrong, 48, and his wife have four children. . . . He has had health issues for seven years and really has quite a story that includes a lot more than kidney failure. . . . One potential donor who was a match found out during testing that she wouldn’t be able to give him a kidney. In the end, another acquaintance is giving him what she calls a “Christmas kidney.” . . . Armstrong equates it to winning a lottery. “She’s actually going to save my life. . . . Thank you isn’t enough,” he told Claire Allen of 980 CKNW, a Vancouver radio station. . . . This is a terrific listen. So take 10 minutes out of your life and check it out right here.


If you haven’t already, do all the people around you a favour and get yourself a flu shot for Christmas.

Here’s Dr. Richard Webby, a member of the Infectious Diseases Department at St. Jude Children’s Research Hospital and the World Health Organization’s Vaccine Composition Team:

With family gatherings and travel during the holiday season, the influenza virus is spreading across the country and (people) need to take precautions now to protect themselves and their families.

“It is still not too late to get vaccinated and for your body to build up immunity this flu season.

“The bottom line is the flu shot is still the most valuable and life-saving public health tool in preventing and spreading the flu. In fact, this year’s flu vaccine has been reformulated and updated based on last year’s shot.”

Some tips for preventing the flu . . . Get the flu shot . . . Wash your hands regularly . . . Cover your nose and mouth when you sneeze or cough . . . Stay home and rest if you are ill . . . Wash your hands . . . Wash your hands . . . Wash your hands.

If you pay attention to anything, please make it this from Dr. Webby:

“Getting the flu vaccine isn’t just about protecting your health, it’s also about protecting those around you who are vulnerable like the elderly, children, and those with serious health issues. The more people who get the flu shot, the less chance the virus can spread while protecting more people.”

There are many people walking around out there who look healthy but due to health circumstances have compromised immune systems. These are just some of the people we need to protect by getting flu shots.

Oh, and Grandma and Grandpa, too.