As a young man with a young family, Trevor Ferguson was shocked when doctors told him he had polycystic kidney disease. In his own words, he shares his story.
I was in the hospital for testing for another ailment and, while delighted that testing came back ok, I didn’t have a clue what life with kidney disease would be like. Immediately, I was referred to a nephrologist. Together we made a plan to get me to transplant without going on dialysis first. That was 12 years ago.
Throughout that decade of living with kidney disease there were definitely some challenges. My wife, Sam, was my rock. Her support was definitely the reason I could keep on going, keep on working, and keep up with my family. As my cysts grew, and my kidney function declined, Sam came forward for testing as a living donor for me. She was well into the testing when my sister Holly said… err no, and insisted that Sam back down and allow her to go forward. Holly realized that Sam would need to be full strength to help me recover from transplant surgery and take care of our two sons. We feel really lucky for that foresight.
In September 2011, one year after undergoing my life-saving kidney transplant, I wrote the passages below about what motivated me to walk in Kidney March with my kidney donor (and sister-in-law) Marian Reich.
I am marching in the Kidney Walk to Calgary because
I believe research is hope. I believe in the power of research and in supporting a cause that makes a real difference in peoples lives.
Over the last 30 years, the Kidney Foundation of Canada has raised over $100M for research. That’s a huge number. Even more amazing is that it has been raised in communities across Canada by individuals like you and me — the families and friends of those affected by kidney disease. These passionate, determined people have held event after event, knocked on door after door,… year after year,… because they believed things could be better. They hoped that an investment in research would change things.
And it has. Research has led to improved quality of life, better dialysis methods, earlier detection and prevention, and for a lucky few, (13% of those diagnosed) a new lease on life through transplantation. If you don’t believe me, talk to your friendly neighbourhood nephrologist, he or she will tell you, as they have told me, what a difference the Kidney Foundation has made to advancing kidney research.
I am marching because
In 1977, Neil Everett McKenzie died in Toronto undergoing his 2nd failed kidney transplant. He was 55. He had been on peritoneal dialysis for what seemed to me to be a very long time. He wore a feather in his hat and always smelled clean. He took us for long drives through blue mountain and somehow made us feel like we were on a roller coaster. He teased and spoiled us horribly. He was a World War II Veteran and a determined man. He never gave up hope.
I am marching because
In 2006, Blaine Everett McKenzie died in Collingwood after a relatively short but painful battle with cancer of the kidney, liver and pancreas. He was 65. He was diagnosed with kidney disease in 1972 and received a transplant in 1975 which kept him alive for 31 more years — allowing him to finish raising three young children who loved him more than life itself. Probably because of his training as a marine engineer, his hand writing was unusually precise and beautiful. His laugh was deep and sincere, like his faith, our countless philosophical discussions over tea, and the love he had for his family and friends. Like his determined scottish father, he never gave up hope, not even in the very last days.
I am marching because
In 2010, I was given the gift of a new life through living donor transplantation. There are no words to thank the many people who supported and strengthened me through this part of my life’s journey. There are no words to thank the person who risked her life so I could have another chance at mine, no words to thank the individuals, my friends, who went through exhaustive testing, preparing themselves to take a huge risk to help me. I won’t waste this chance. It is time to act. This walk, like many other things we may choose to do in our lives to make a difference, is a tangible act of determination and an act of hope. Like my stubborn grandfather and father, I will never give up hope. I guess it is in the genes. You have take the good with the bad 🙂
I am marching because
I have three beautiful daughters who depend on this life changing research continuing. Like the hundreds of thousands who may be profoundly affected by kidney disease in the next decade, directly or indirectly, research is their hope too.
Now fast forward to today. If my past and present wasn’t enough, this year, I have even more reason to be involved once again.
In September 2014, Alexandra Hope Smith was diagnosed with kidney disease. Despite a family history of the disease, it was still a shocking diagnosis for a healthy young woman with no symptoms and her whole life in front of her. Though she was rarely ever ill or even unhappy for that matter, I have a vivid picture in my mind of the wee tot who looked a lot like tweety bird squeezing her big blue eyes in utter fear whenever we rumbled over the unpaved part of the road that led to our home in the country. I remember how bad I felt when I saw that terrified look on her little face, so I drove faster to get off the road and take the fear away.
And now, twenty years later, I have that same raw feeling of helplessness as I struggle to figure out how I can help take away her fear as she navigates this scary but all too familiar path. This time, I can’t drive faster or reach into the back seat to hold her hand and make things better. This time, I can’t drive off the gravel road. All I can do is face this family kidney curse again — head on — this time with my kind and beautiful daughter. Of course, we’ll do what we have to do and there will be a few tears, but we won’t stop to dwell on it or allow it to derail any of Alex’s hopes and dreams. We will shore ourselves up, ask lots of questions, and we will find the answers together. Love you Allie Cat.
Source: CTV News, published Monday July 15, 2013 by Vickie Chase.
Sept 6-8, 2013, hundreds of citizens will join together to make the boldest movement ever made in the battle against kidney disease. They will lace up their walking shoes and take on the Kidney March challenge, a three day, 100 kilometer walk, from Kananaskis to Calgary. Hosted by the Kidney Foundation of Canada, Kidney March raises awareness and funds to support kidney disease research, patient support programs, and organ donation initiatives.
Kidney disease is a lifelong, irreversible illness with no cure. 80 per cent of Canadians waiting for an organ donation are in need of a kidney, and those affected is expected to double in the next ten years.
Source: Medicine Hat News – published July 22 2013, by Charles Lefebvre.
Voula Douvis has a strong motivation to take part in the 2013 Kidney March this September.
“A year ago, my daughter Christina was diagnosed with kidney disease,” she said. “Our lives have changed quite a bit.”
Christina, who is 10-years-old is now on a number of medications which affect her in different ways, and the family has to make a number of trips to the children’s hospital for regular blood tests.
The diagnosis inspired Voula to form a team with Dawn Hunt, Sonita Goehring and Lisa Perich to participate in the Kidney March from September 6-8 in Kananaskis. Douvis was out on Saturday with her team in front of Wal-Mart, holding a fundraising barbecue to raise money for the foundation leading up to the march.
Source: Shawnee Evergreen – Published July, 2013 by Erin Birbeck.
Most people diagnosed with kidney disease the news comes as a surprise. They had little awareness of kidney disease until forced with the diagnosis. For local Shawnessy resident Shannon Guyett, this is not the case. Several generations of Shannon’s family have been affected by kidney disease, and she knows all too well the burden it creates. Watching both her grandfather and father die from kidney disease, and then being diagnosed with polycystic kidney disease (PKD) herself, Shannon was determined to change the fate of her family. Unfortunately, the fight against kidney disease for Shannon’s family did not stop with her. At age 13 her daughter Alyssa was diagnosed with the same disease that has drastically altered Shannon’s life. Seeking to help her daughter adapt to a life with kidney disease, Shannon came to The Kidney Foundation of Canada.
When Shannon heard about the foundation’s annual Kidney March, there was nothing stopping her from taking on the challenge of walking 100 kilometers, in 3 days, from K- Country to Calgary.
Shannon explains, “When you go from having full kidney function and living life to the fullest, to finding out your kidneys are only functioning at 28%, it’s an eye opener. I can delay kidney failure but will not be able to stop it.”
Source: Lethbridge Herald – Published June 29, 2013 by Simmons, Garrett.
At the age of 25, living a healthy life, the last thing Kate expected was to be diagnosed with chronic kidney disease. However, when the former Lethbridge resident experienced severe headaches that would not go away, she was shocked to learn her kidneys function had dropped to an astounding 13%. Kidney disease usually starts silently and slowly, which is why it is often referred to as the silent killer. Most patients are treated on dialysis when their kidney function reaches 15%.
Two years later, thanks to dramatic lifestyle changes and medication, Kate’s kidneys are functioning at above 20%. Kate is grateful that on some days, she almost forgets that she has kidney disease. She is dedicated to living life to the fullest, knowing that sometime in the future the investable will happen, and she will need a kidney transplant.
Source: Springbank Park Patter – Published June 2013 by Erin Birbeck
Kidney March isn’t a race, it’s about doing the most you can do. What is stopping you from making a difference? On September 6 -8th, 2013 over 200 people will lace up their walking shoes to march 100 kilometers, over three days, from K-Country to Calgary, in the fourth annual Kidney March. Hosted by the Kidney Foundation of Canada, Kidney March raises awareness and funds to support kidney disease research, patient support programs, and organ donation initiatives.
Kidney disease is referred to as the “silent killer” because most people are unaware they are at risk. It is a lifelong, irreversible illness, with no cure. 80% of Canadians waiting for an organ donation are in need of a kidney, and those affected by the disease are expected to double over the next ten years. Participants involved in Kidney March, including marchers, crew members, patients, and donors are taking one step closer in the battle against kidney disease. For the millions affected by kidney disease, failure is not an option. In the past three years over $2.3 million has been raised in support of kidney disease.
Source: Calgary Hearld Neighbours The Community Weekly – Published June 13, 2013 by Paula Trotter
Michelle and Jason Hofer erupt into laughter when asked if they have a close relationship. The two joke back and forth about not being able to choose our siblings before Jason tells Michelle that she’s stuck with him for a brother — and you get the sense that she is more than OK with that.
“You never think you’ll lose somebody and thankfully we haven’t lost Jason,” says Michelle, 29, the younger of the two. “Still, it’s hard.”
Jason suffers from kidney failure and is awaiting his chance at a second organ transplant. Both siblings were diagnosed with Alport syndrome, a hereditary kidney disease, when they were kids. Their mom also has Alport syndrome, but is in stable condition. The illness, however, started shutting down Jason’s kidneys when he was 16.
“It’s definitely not fair,” Michelle says of the disease that has left her with very minor symptoms to date, but has turned her brother’s life upside down. At 24, Jason suffered renal failure. He has been on dialysis for the past eight years and currently goes for dialysis three times a week, spending four hours hooked up to a machine that removes waste and excess fluid from his blood.
One of his uncles donated a kidney in 2006, but Jason’s body rejected it, despite a year’s effort to try to save the organ with trips to the hospital and medication.The drugs caused avascular necrosis, which killed the bone tissue in Jason’s hips and shoulders. At 27, he underwent his first hip replacement. His other hip was replaced a year later and his shoulder joint was replaced in between the surgeries on his hips.
“You only have two options:deal with it or don’t. And not dealing with it really isn’t much of an option,” he says.
Once a promising young hockey player, Jason, 31, now has to limit his physical activity in the hope of extending the lifespan of his artificial joints, which is why his doctor recommended that Jason not participate in the annual Kidney March this fall. So Michelle stepped up and will complete the three-day, 100-kilometre trek through Kananaskis to raise awareness for organ donation and money for the Kidney Foundation of Canada.
“He’s my big brother — he’s always been there for me,” she says. “Now it’s my turn to be there for him.”
The Kidney March kicks off Sept. 6 south of Calgary near Millarville, with participants walking about 30 kilometres each day, making their way toward the finish line at Canada Olympic Park in Calgary. Michelle has raised $1,600 so far, just past the halfway mark for the $2,200 that all participants are required to raise (her goal is $3,000). Jason has also raised an impressive $4,600 in a short amount of time. He will be volunteering at the Kidney March as a crew member so he can be on site to offer encouragement to his little sister.
“She’s doing this for me, so I’m going to be there for her.” She and her brother are most eager to raise awareness and money to fight back against a disease that has greatly affected their family — and countless other Canadians. According to the Kidney Foundation of Canada, one in 10 Canadians has kidney disease and many more are at risk. This adds up to roughly 2.6 million Canadians. Kidney failure can be fatal without intensive treatment — ongoing dialysis or a successful organ transplant.
Source – Airdrie City View, published May 30, 2013 by Allison Chorney/Rocky View Publishing.
The community of Prairie Springs will be raising funds June 1, for a local family who is participating in the Kidney March in September on behalf of their daughter, who has kidney disease.
The neighbourhood will be hosting the inaugural Prairie Springs Garage Sale Parade from 8 a.m. to 3 p.m. throughout the community.
“We thought as a community, if we could help out a family in need we would,” said event organizer Tracey Tremblay.
Taylor Nadraszky, 13, suffers from nephronophthisis, a disorder of the kidneys that will eventually result in kidney failure and the need for transplant.Nephronophthisis is a rare genetic condition that is the result of inheriting the recessive gene from both parents who are carriers of the gene. When Taylor was diagnosed with the disease in November of 2011, her kidneys were functioning at 44 per cent. A mere 10 months later, her kidney function had reduced to 29 per cent. Kidney failure occurs at 15 per cent functioning.Taylor’s condition is a chronic illness and the Nadraszky’s take things one day at a time.
Tremblay said the event will include help from local children, who will be selling lemonade and hand-draw pictures with the funds going to Michelle and Bill Nadraszky’s efforts in the Kidney March. The event will also include the chance to win gift baskets full of products and vouchers including Norwex products, hair products, a family photography session and a gym pass.
“The Nadraszky family doesn’t live in Prairie Springs but Airdrie is a pretty tight community,” Tremblay said.
She added once a community member made her aware of the Nadraszky’s situation and participation in the Kidney March, she started thinking of ways the neighbourhood could help.
The event was originally planned to be a raffle for the gift baskets but Tremblay said so many people showed interest in becoming involved it became a big community-wide garage sale. At the time of press, Tremblay said about 20 homes had registered to participate in the garage sale.
“With the baskets and the local kids helping out, I think we’ll be able to raise a lot of money,” she said.
Both Michelle and Bill Nadraszky need to raise a minimum of $2,200 to participate in the three-day, 100-kilometre walk, which raises funds for the Canadian Kidney Foundation.
“This is great,” Bill Nadraszky said. “I am looking forward to helping out and really excited and thankful that the Prairie Springs Community garage sale will be helping to raise funds for our cause.”
“The whole town of Airdrie has been amazing,” Michelle Nadraszky said, “residents, businesses, everyone. Complete strangers have offered to help us.”
Any items not sold at the garage sale will be picked up on June 2 and donated to charity, thanks to business sponsors such as Bates Mortgages and Airdrie Upcycle.
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