I don’t make a habit of watching the annual Tournament of Roses Parade from Pasadena, Calif. But I plan on watching the 131st annual event on New Year’s Day.
To honour Regina Tanner and all of the other generous folks who have donated kidneys. (Hello, Susan Duncan and Cheryl Vosburgh and Louis (Big Rig) McIvor and so many others.)
Regina, who is from Fresno, Calif., will be in the Parade, walking with the Donate Life Rose Parade float. Regina gave up a kidney in 2016 so that her husband, Cary, could get one via transplant. The two of them ended up part of a paired kidney donation chain that featured 18 people.
That piece also includes some interesting facts and statistics regarding organ donation and transplantation.
IN THE NEWS! 📰📣 Against All Odds: Penticton resident looks back at receiving three kidneys in 32 years. Folstad received his first kidney at the Vancouver General Hospital in 1986 after being diagnosed with kidney disease at age 19. https://t.co/ZdW4cuFqJ9
IN THE NEWS! 📰📣 Penticton man donates kidney after reading article on Castanet. Medicine Hat resident John Boksteyn received a kidney transplant from a Penticton man after being on dialysis for three and a half years.https://t.co/umOHFF50vc
IN THE NEWS! 📰📣 She saved her sister with a kidney donation. 40 years on, they're still celebrating. Sisters Lorna Telherio and Donna Watters were born 14 years apart, but when it came to being a match for a kidney donation, they are just like twins.https://t.co/IAczv0f320
Dorothy and I were in Regina the other night to spend time with good friends who lived across the street from us when we lived in the Saskatchewan capital.
Their son, who is experiencing kidney failure and recently began hemo-dialysis, was there, too.
There were a whole lot of questions and answers, and here’s hoping we were able to help.
At the same time, we are hopeful that we were able to start him down the road to a kidney transplant. A friend of his has said that he is more than willing to be a donor in order to help him get a kidney, but neither of them was at all certain about how to begin the process.
So I did a bit of research and found a really good website belonging to the Saskatchewan Health Authority. This site includes an online brochure that features a lot of good information for anyone thinking about being a kidney donor, regardless of their location.
That page is right here and it’s well worth a look.
As well, if you are living in Saskatchewan, and thinking about being a living donor, you may contact:
“About 90 people in Saskatchewan are currently waiting for a kidney transplant. On average, they will wait 2.8 years for a kidney — that’s 437 dialysis treatments per person. Please offer hope by talking to your family about organ and tissue donation.”
If you are considering being a donor, do the research and make a decision. Someone’s life may depend on it.
Also . . . always remember that there isn’t a cure for kidney disease. A transplant isn’t a cure, but it does allow the recipient to have a much better quality of life.
RE/MAX of Western Canada and the WHL are once again getting behind WHL Suits Up with Don Cherry to Promote Organ Donation, the annual promotion that benefits the Kidney Foundation of Canada and its provincialbranches.
If you aren’t familiar with this promotion, it involves the WHL’s 17 Canadian-based teams, each of whom uses one game each season to help promote organ donation and transplantation.
I don’t have dates for all teams but the B.C. Division games will go like this: Prince George Cougars, Jan. 31; Vancouver Giants, Feb. 8; Kamloops Blazers, March 6; Victoria Royals, March 13; and Kelowna Rockets, March 14.
During the 2017-18 season, the promotion in WHL cities raised more than $265,500, making it the largest public awareness and fundraising campaign in the history of the Kidney Foundation. Last season, the final total raised was $196,600.
In two seasons then, RE/MAX of Western Canada and the WHL have helped raise more than $460,000.
The 10th annual Kidney Walk Kamloops is scheduled for Sunday, Sept. 22, at McDonald Park on the North Shore.
Registration will open at 10 a.m., with the walk to start at 11. And we will walk in the rain if the forecast holds true.
If you would like to join us, you are able to walk all or part of the approximately 2.5-km pathway between McDonald Park and McArthur Island. Or you don’t have to walk at all; you might want to just sit and enjoy the company and festivities, then have breakfast. The Brock Central Lions Club will be on hand to provide breakfast — pancakes, sausages and coffee — by donation.
The Kidney Walk helps the Kidney Foundation raise awareness about kidney disease and raises funds for important programs and services to help kidney patients in this community and others across BC and the Yukon.
My wife, Dorothy, will be celebrating the sixth anniversary of her kidney transplant by taking part in her sixth straight Kidney Walk. In her six walks, she has raised more than $15,000. If you would like to support her — she reached the $3,000 mark on Thursday — you may do so right here.
A note from the Kidney E-News letter of the BC and Yukon Branch of the Kidney Foundation of Canada:
“The BC & Yukon Branch and the Children’s Organ Transplant Society (COTS) were excited to have 43 youth from across BC attend Camp Latona on Gambier Island in August.
“The kids got to enjoy the camp experience with other young people at various stages in their kidney disease/organ transplant journeys. The weather was fantastic and some of highlights included tubing, campfires, extraordinary food, swimming and, of course, making new friends!
“A huge thank you to all of the gracious donors who made it possible for the kids to attend a cost-free, worry-free camp. We appreciate you!”
DID YOU KNOW? Patients and caregivers can add their voice to the BC PharmaCare drug review process. Occasionally, medications of interest to kidney patients are under review and open to input. There is such an opportunity open until October 16.https://t.co/Y9bTOk2HEgpic.twitter.com/j0aEsQvuqk
IN THE NEWS! 📰📣 Five-year-old with kidney disease surprises doctors. Outwardly Lincoln looks like any other child his age, but he is not like other children. The little boy is living with serious health problems which began before he was even born.https://t.co/EVnUq8s6ea
Almost all is in readiness for Kamloops’ 10th annual Kidney Walk.
We will gather on Sunday at McDonald Park on the North Shore, with registration at 10 a.m., and the walk to begin at 11.
Edna Humphreys is the executive director of the Kamloops branch of the Kidney Foundation. I can tell you from experience that without her leadership and organizational skills, the Kidney Walk would experience some difficult times.
(It’s also worth noting that if it’s a renal-related activity in Kamloops, you can bet that Humphreys is in the forefront. Among other things, she is a co-founder of the Kamloops Kidney Support Group, and also is the lead organizer of a Christmas luncheon for dialysis patients and transplant recipients. With music by old friend Jesse Jones. Yessss!)
Anyway . . . Humphreys recently took time out from her busy schedule to talk with Todd Sullivan of Kamloops This Week about the 2019 Kidney Walk.
One of my favourite renal-related stories involves a woman named Catherine Pearlman, who walked into a Los Angeles-area Starbucks on Dec. 30, saw a poster on a bulletin board, and decided that very moment to become a kidney donor. . . . The result was that Eli Valdez, a complete stranger, received one of her kidneys. . . . They told their story to today.com, and it’s all right here.
If you missed it earlier, Pearlman wrote about her experience for the Los Angeles Times, and that piece is right here.
Catherine’s husband, Jeff Pearlman, is a writer and published author. He wrote on his blog about what all of this meant to him. Here’s how he started it:
“It’s 10:15 am, and as I write this my wife Catherine is in surgery here at UCLA’s Ronald Reagan Medical Center — donating one of her kidneys to a complete stranger.
“You read that correctly, but I recommend reading it again. My wife Catherine is in surgery donating one of her kidneys to a complete stranger.”
BTW, if you are a sporting fan and haven’t read Jeff’s book, Football for a Buck, you’re cheating yourself. It’s all about the USFL — remember that league? — and is loaded with especially juicy anecdotes, including some involving, yes, Donald Trump.
Laura Gillum’s son, Dean, was 23 months old when he drowned in the family’s backyard pool in the Pittsburgh area in 2015. His heart, lover and kidneys were donated.
“My son was amazing,” she told Lisa Washington of KDKA-TV. “At 23 months old, he saved three people’s lives. Not many people can say that, and even though he’s gone, I try every day to do something to make him proud of me.”
On March 7, Lisa donated a kidney to Brian Cox, a complete stranger. They met early in April.
“I just can’t comprehend why someone wouldn’t want to donate their kidney, so hopefully getting the message out, more people will want to do it and that they’ll want to educate themselves to find out just what everything entails,” Gillum said.
IN THE NEWS! 📰📣 BC Children’s Hospital was a life-saver for Vancouver Island family. At BC Children’s Hospital, Jeremy had surgery to remove his right kidney along with the tumour, which was a Wilms tumour— a type of childhood kidney cancer.https://t.co/OLe0OY5d5G
Here are the @WTGF_Games in numbers. 1500 athletes from 6 to 84 yrs old. 52 athletes and 6 donor/donor family athletes on Team Canada. 53 countries represented. 800+ volunteers. 16 sporting events. Canada came 4th overall in the medal count with 23 gold, 21 silver and 20 bronze. pic.twitter.com/wYszYU8zw5
Allow me to introduce you to our good friend Margaret (Maggie) Thompson.
She and my wife, Dorothy, have forged quite a friendship, one that began because they have something in common — both have had kidney transplants.
Dorothy had one six years ago; Maggie underwent one more than eight years ago.
A few years ago, they got together, along with Edna Humphreys, and started the Kamloops Kidney Support Group in an attempt to help others who are dealing, directly or indirectly, with kidney disease. To say the KKSG has been a success would be something of an understatement.
Dorothy and Maggie both did peritoneal dialysis before being cleared for transplant, and both are representative of how having kidney disease doesn’t have to slow one down.
Having said that, though, Maggie is in a league of her own.
In brief, here is a definition of peritoneal dialysis from kidneyfund.org: “Peritoneal dialysis (PD) is a treatment that uses the lining of your abdomen (belly area), called your peritoneum, and a cleaning solution called dialysate to clean your blood. Dialysate absorbs waste and fluid from your blood, using your peritoneum as a filter.”
A catheter is surgically implanted into our peritoneum that will allow you to do fluid exchanges. You learn how to do PD manually four times a day before being given a cycler that allows you to do it while sleeping at night. And the only way it limits your ability to travel is if you allow it to, something Maggie wouldn’t do.
A Harley-Davidson rider and owner, Maggie took a lengthy trip with friends into the U.S. a few years back. She drew up a travel schedule and arranged with Baxter, the company that provides PD supplies, to make fluid drops at various stops. Friends constructed a trailer that she towed behind her Harley; it contained other needed supplies.
As the friends travelled, then, they would stop to allow Maggie to do her exchanges.
Since having her transplant in July of 2011, Maggie hasn’t slowed down at all. She moved to Edmonton early in 2018, but makes regular visits to Kamloops, where she had lived for 30 years. Earlier this summer, she took two grandsons to the Calgary Stampede — yes, she also has a car — and then on a tour around Vancouver Island that included a stop in Tofino.
Late last week, Maggie rode her Harley — she called it the Blue Bomb — to Kamloops, where she visited the local dealership and traded it in on a Freewheeler Trike that she has dubbed Sassy Sapphire.
After a few days with us, Maggie climbed aboard Sassy Sapphire on Tuesday morning and headed home to Edmonton. She arrived early last evening having been on the road for almost 12 hours.
No, kidney disease hasn’t slowed down Maggie Thompson in the least.
It is National Polycystic Kidney Disease (PKD) Awareness Day in various parts of the world today (Wednesday, Sept. 4).
According to a news release:
“Since 2014, Health Canada has recognized September 4 as National Polycystic Kidney Disease (PKD) Awareness Day – a special day devoted to raising awareness of this life-threatening, genetic disease.
“Polycystic kidney disease (PKD) is a chronic, genetic disease causing uncontrolled growth of fluid-filled cysts in the kidneys, often leading to kidney failure. With 66,000 Canadians and millions worldwide living with PKD today, chances are high that you know someone with the disease.
“The more who know about PKD, the more resources we can dedicate to finding treatments and a cure. PKD Awareness Day is our opportunity to step up our efforts and gives us a platform to widely spread the word, share stories and encourage others to learn more. On PKD Awareness Day, let’s come together as a united front to spread the word about this disease further than we ever have before!
“Since its creation in 1993, the PKD Foundation of Canada has raised more than $1 million towards research, support and help for families living with PKD. From the first research grant awarded in 1999, the PKD Foundation of Canada has set up chapters and support groups across the country, built an expansive and passionate volunteer network, and connected with PKD groups around the world to support our most notable fundraising event – the Walk to END PKD.
“Today, the PKD Foundation of Canada is the only national organization solely dedicated to fighting PKD through research, education, advocacy, support and awareness.”
In Kamloops, locals involved in the PKD Foundation will appear before City Council on Sept. 10 in an attempt to spread awareness.
Here in Kamloops, preparations are well underway for the annual Kidney Walk, which is scheduled for Sept. 22 at McDonald Park. . . . If you would like to take part, we register at 10 a.m., with the walk to follow at 11. Some of us will walk a couple of kilometres, but there isn’t a defined distance. In fact, you don’t need to walk at all. Just come and join us for the breakfast — pancakes, bacon and coffee, by donation — with the Brock Central Lions Club doing the cooking. . . .
My wife, Dorothy, will be celebrating the sixth anniversary of her kidney transplant by taking part in her sixth straight Kidney Walk. In her six walks, she has raised more than $15,000. If you would like to support her, you may do so right here.
A reader sent me a link that led me to a story on USA TODAY’s website. I had to read the story a couple of times because I found it so shocking.
Here are the first two paragraphs:
“The United States discards about 3,500 donated kidneys a year, many of which could be used to save lives, new research shows.
“The study, published Monday in the journal JAMA Internal Medicine, focused on the rate at which donated kidneys were used in the U.S. and France between 2004 and 2014. In that time, the U.S. discarded about 17.9% of the kidneys it recovered, while France discarded about 9.1% of the kidneys it recovered. In all, the U.S. threw away almost 28,000 donated kidneys in that 10-year period.”
Let that sink in for a few minutes. People are dying because they need kidneys and yet donated kidneys are being trashed.
The study was published in JAMA — The Journal of the American Medical Association.
During the time under study, the U.S. recovered 156,089 kidneys from deceased donors and discarded 27,987 (17.9 per cent) of them. In France, 29,984 kidneys were recovered, with 2,732 (9.1 per cent) of them discarded.
According to figures supplied by the National Kidney Foundation, there are almost 100,000 Americans in need of kidney transplants. While 12 people on the waiting list die each day, about 10 kidneys are trashed each day.
Adrianna Rodriguez of USA TODAY wrote:
“The study showed that kidneys discarded in the U.S. were on average about 36 years old, whereas kidneys discarded in France were on average about 50 years old. That means France had a higher kidney acceptance rate from older donors.
“The study found that the U.S. is more likely than France to throw away kidneys when the donor had hypertension, diabetes, had a heart attack or tested positive for Hepatitis C.”
That story also included this quote from Sumit Mohan, associate professor of medicine and epidemiology at Columbia U in New York City: “They should definitely be used and are definitely viable. Using kidneys from diabetic donors do remarkably well.”
Rodriguez points out that “the mortality rate for patients who go on dialysis is about 20 per cent annually, which works out to be a five-year survival rate.”
Mohan told Rodriguez: “It’s comparable to some of the worst cancers we see.”
Keep in mind that while some cancers are curable, there isn’t a cure for kidney disease. No, there isn’t.
Mohan added: “People aren’t asking ‘What’s the quality of my kidney?’ The question that everybody asks is, ‘When am I getting my kidney?’ ”
In short, the system in the U.S. is broken. The good news it that there is a move afoot to overhaul the country’s organ transplant regulations. The bad news is that we all know that won’t happen this week or next.
The USA TODAY story is right here and it really is worth a read.
The complete JAMA Internal Medicine study is right here, and it is absolutely devastating if you are an American and at all impacted by kidney disease.
Another reader sent me a link to an editorial in the New York Daily News. The editorial board there writes: “Beggars know they can’t be choosers. Even an imperfect kidney is better than life, and ultimately death, on dialysis. Fix the rules so more Americans can receive the gift of life.” . . . The complete editorial is right here.
All of this hits really close to home. My wife, Dorothy, had a kidney transplant on Sept. 23, 2013. Had we been living in the U.S., the kidney she received likely would have been rejected because it may have failed one of the afore-mentioned qualifiers.
At that point, she had been doing peritoneal dialysis for almost four years.
If you are in the area of Granville Island in Vancouver early in September, you may want to check out this play — Waiting Time — that will be part of the Fringe Theatre Festival.
We’re excited to help shout about a new Canadian play called Waiting Time at @VancouverFringe, spotlighting a story about transplant and organ donation. Opening night kicks off next Thursday, Sept 5! pic.twitter.com/7Hb5E7AOdb
IN THE NEWS! 📰📣 'It’s hard on the whole family' Saskatoon baby awaits organ transplant. Baby Emmet is battling nephronophthisis, a rare genetic disease of the kidneys and liver. https://t.co/W6mAnwo1sn
Paul and Jane are #TransplantGrandparents. Thanks to a life-saving liver transplant in 2011, Paul got to walk his two daughters down the aisle on their wedding days and be present at his son’s. His is grateful for the extra time to watch his five little grandchildren grow up. pic.twitter.com/0dkB0dP081
Catherine Pearlman was in a Los Angeles-area coffee shop one day when she saw a flyer involving a man she had never met. That man, Eli Valdez, was in desperate need of a kidney transplant. . . . Pearlman ended up donating a kidney to Valdez. . . . If you have ever wondered about the thought process involved in giving a kidney or what it means to be on the receiving end — like, what does it mean to have someone else’s organ in your body? — give this right here a listen because it is absolutely awesome. . . . Valdez especially bares his soul over the 45-minute conversation. I can tell you from experience that my wife, Dorothy, who had a transplant on Sept. 23, 2013, had many of the same feelings as did Valdez.
If you aren’t familiar with this story, Catherine’s husband, Jeff, who is a writer of note, posted a piece on his website shortly after the transplant. That piece is right here.
A couple of weeks later, Catherine wrote a piece for the Los Angeles Times in which she described all that she and Eli had gone through. That piece is right here.
PKD Awareness Day takes place on an annual basis, always on Sept. 4. Millions of people worldwide, including more than 66,000 Canadians, live every day of their lives with PKD, or polycystic kidney disease. As the above tweet mentions, PKD “causes uncontrolled growth of cysts in the kidneys, often leading to kidney failure.” . . . According to the BC Renal Agency’s website, “autosomal dominant polycystic kidney disease is the most common inherited renal disorder, and is the fourth-leading cause of end-stage renal disease in Canada.”
Watch for PKD Awareness Day in your community.
Volunteers are the backbone of @KidneyBCY. They help advance our mission and vision—to eliminate the burden of kidney disease and achieve excellent kidney health, optimal quality of life, and a cure for kidney disease. Want to help? Contact Janeen: email@example.com pic.twitter.com/k1qZugvcMd
Since Rob received a kidney from his dad 10 years ago, he’s travelled to over 20 countries around the world and stepped foot on every continent. He lives life to the fullest as none of this would have been possible for him before transplant. Rob is part of #50YearsofTransplant. pic.twitter.com/BGThlTDvDh