Campaign from November 29 to December 31
Hospital stays, crowded schedules due to dialysis, dietary restrictions, the limitation of human contact in order to avoid getting a virus after a transplant, lack of income from irregular work, anxiety because there is no cure: people with kidney disease often feel isolated, especially around the holidays when family celebrations are so common.
This is why the Foundation organizes holiday festivities (patient visits, hospital parties, family days) in several regions of Quebec for women, men and children living with kidney disease as well as their families.
For every dollar you give, the Bombardier Aerospace employees’ charitable fund will match your donation.
Your $30 donation = $60, or your $50 donation $100, and so on. Twice the generosity = twice as much joy to spread around.
Finnish Type Congenital Nephrotic SyndromeKidney transplant recipient
Impact of the disease on her life
From an early age, Pénélope faced hardships few people ever experience in an entire lifetime. At three months of age, she was diagnosed with Finnish Type Congenital Nephrotic Syndrome. From the moment both her kidneys suddenly stopped working, she had to undergo dialysis three times a week until the day she had a transplant in 2004 at age 4.
Renal failureKidney transplant recipient
Impact of the disease on her life
Janou is someone whose life story is as incredible as it is wonderful. Born in Asia and adopted by a couple from Quebec in 1975, she was sickly when they brought her home to Canada. After being treated by one of the province’s rare tropical disease specialists at the time, she was finally declared healthy and raring to go! And it’s true! She went on to study, work and develop professionally until one fateful day in 2008 when a blood test revealed that she had overly high blood creatinine levels. In the five years that followed, she kept working but had to take medication until the day she had to go on dialysis. By the time she finally received a transplant, her renal function had dropped to 5%. Many people in her birth country have kidney conditions. But fate gave Janou another chance thanks to a woman who gave her the ultimate gift.
Focal Segmental GlomerulosclerosisKidney transplant recipient
Impact of the disease on his life
Lloyd was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) in 2003. He received his first kidney transplant from his brother in 2009. Unfortunately, his body started rejecting the transplanted organ several months later. He was put on the waiting list for another kidney for two years while enduring dialysis on a daily basis. He received a second kidney transplant from an anonymous donor in 2014 and since then he has finally found long-lasting health and a new zest for life.
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In 2014, the Kidney Foundation of Canada celebrated 50 years of helping people living with kidney disease. The Foundation is committed to kidney health and to improving the lives of everyone with kidney disease, in particular through programs and services for patients, such as the end-of-year parties it organizes.
The research and development of new treatments and technologies are also critical to ensuring a future for the growing number of people who will be diagnosed with kidney failure in the coming years.
* Except in rare cases of kidney disease caused by a temporary infection
Whatever the format of the end-of-year party, the doctors, nurses, Foundation employees and volunteers all get together to plan a magical event for the patients with a delicious meal, games, music and entertainment, and even little gifts. But, most of all, there’s the feeling of letting go: For a little while, the disease is no longer front and centre in the patients’ minds and there’s only the joy of living in the moment.
This year, your donation will go toward planning a number of parties throughout Quebec:
Abitibi-Témiscamingue: 5 patient parties
Mauricie: 1 party for more than 100 people
Montreal: 7 parties for more than 800 people
Outaouais: 4 patient parties
Quebec: 2 parties for more than 200 people
Estrie: 1 patient party
Saguenay–Lac-Saint-Jean: 3 parties for more than 100 people
Throughout her treatment, she was fed through a feeding tube—a very invasive technique, especially for a child under 4—that was inserted through her nose down to her stomach. That was the only way her medical team could ensure that she was well fed and receiving all the nutrients she needed.
Pénélope had to wait until she was 4 for her transplant because she didn’t weigh enough (around 10 to 11 kg) for her abdomen to accommodate an adult kidney.
Her memories of the transplant are vague at best. The day of her transplant, her parents woke her up to go to the hospital. She remembers telling them, “Not now, I’m still sleeping,” not realizing how important a day it was going to be. Given her age, who could blame her? She remembers her scar being itchy and her mom telling her not to scratch it, which made her mad.
After the transplant, her life changed radically. Almost overnight, she was able to start eating like everyone else, and she began attending school on the right footing. “I was really lucky, because the kidney arrived just in time for me to start school at the appropriate age,” she said.
That was also when Pénélope started attending the Kidney Kids’ Camp run by the Foundation. For a number of years, she enjoyed this week-long summer camp whose facilities are adapted to her condition and where nurses are on hand day and night. “It was amazing! Fun activities, lots of other kids like me, and the friendly nurses from Sainte-Justine Hospital taking care of us. And my nephrologists were even there sometimes, which was nice,” said Pénélope.
She’s had the same kidney for 14 years now and twice a day she takes 11 different medications including three anti-rejection drugs to prevent her body from rejecting the graft. She goes in to the nephrology unit every month for blood tests and other analyses and sees her doctor every three months. “So far, everything is going really well and I hope that won’t change. I’m staying positive and optimistic,” said Pénélope.
Now that she’s older and more independent, Pénélope volunteers with the Foundation, helping to organize the Sainte-Justine Hospital’s Christmas party for kids who are on dialysis or have had a transplant. For the upcoming Christmas party in early December, she’ll be helping find gifts for the kids and lending a hand at the arts and crafts table. “For some kids, it’s their only Christmas party because dialysis and all their other treatments tend to overburden parents,” she said.
It’s important for her to be involved at this time of year, when many families struggle instead of experiencing the joys of the holiday season. Families dealing with kidney disease often experience isolation, but that is something Pénélope is determined to change.I give
I’m Janou’s aunt. I’ve known her for what seems like forever, and the day we met, we really clicked. When I found out about her condition, I knew I had to do something. I immediately let her know that I wanted to donate one of my kidneys to her. It was a really emotional time. My husband supported me despite his fears and doubts.
I was determined to donate, both as an aunt and as a human being. I underwent a series of tests one at a time. During the last one, they found a potential anomaly. They operated on me preventively to make sure I would be as healthy as possible and so I could donate my kidney. Some say that when you lose, you win. I prefer to say that when you give, you receive too!
Janou’s transplant got the go-ahead on her 40th birthday. I was 60 at the time.
Today, we’re both doing well, and thanks to The Kidney Foundation of Canada’s awareness activities, Janou learned that she too can donate. When she passes away, all her organs will be donated for transplant purposes because she signed her organ donor card so that she could give others hope and bring things full circle.
Over the holidays, we’ll be celebrating this donation yet again. And fully aware of how privileged we are—we know that people on dialysis have to limit their fluid intake—we might even raise a glass to our one-of-a-kind relationship. This Christmas, let’s donate… to celebrate life and make it sweeter for all those affected by kidney disease.
- Lorraine, Janou’s auntI give
His journey with kidney disease started when a simple medical check-up ended up changing his life forever. The year was 2003, he was 22 years old and seemingly in good health when he was hired to work in a hospital, and as part of the hiring process, it was mandated that he undergo a thorough medical examination. It was through this check-up that he discovered that he had traces of blood and protein in his urine. An appointment with his family doctor led to further screens, examinations and tests, and finally a referral to a nephrologist. Then came the news... he was diagnosed with Focal Segmental Glomerulosclerosis (FSGS). “Say what?” was his initial reaction, and it was further explained to him that his kidneys were only functioning at around 30%, and that he was heading towards a chronic and degenerative illness that would lead to his kidneys completely shutting down. Needless to say, it was a big shock for him to discover this news since he leads a seemingly normal and healthy life up until then and he had no signs or symptoms to suggest something was physically wrong.
But he kept on living his life for the time being, going to school, working part-time, socializing and keeping active, not fully realizing the scope of his diagnosis yet until he started developing physical symptoms: hypertension, swollen extremities, changes in his energy level and mood, and so on. The initial state of denial that he had kidney disease was slowly turning into a realization that this disease was real, and it was starting to affect him on a daily basis.
His kidney function had eventually reached to a very low point that his nephrologist diagnosed him with end stage renal failure. He needed an intervention: dialysis or a transplant. Luckily, he had two siblings who witnessed his steady decline and were more than willing to be screened as potential candidates to donate a kidney. Eventually, it was his brother who emerged as the best match, and on November 19, 2009, they both got wheeled in the operating room at the Royal Victoria Hospital and Lloyd received his first kidney transplant from his brother.
The surgery went extremely well. He spent about five days post-op in the hospital and was back home in no time. The medical follow-ups that were very frequent in the beginning became more spaced out over the next few months. However, there was still a small lingering thing that his doctors weren’t happy about: his creatinine levels began slowly rising. This was not normal, and after several scans and biopsies to try and determine the cause, he received the worst news you can hear after receiving a transplant: his body was rejecting the kidney received from his brother.
Devastation and disbelief were just some of the emotions that were running through him, especially knowing that the chances of compatibility with his brother were supposed to be high. This second time around, there was no donor ready and available instantly to save him, thus dialysis was the only option for the time being, and he was placed on the waiting list for another transplant.
Then one morning in January 2014, he suddenly received a phone call that he never expected would come; another kidney was available, and he was next on the list. Feelings of excitement and cautious optimism along with relief were tempered with fear and uncertainty as he readied himself for the hospital once again after two very difficult years on dialysis. he received his second transplant from an anonymous donor on January 9, 2014.
Lloyd is very thankful to the Kidney Foundation that helped him in many ways during those years. This gift has enabled him to not only appreciate a second chance at life but also to promote the benefits of organ donation and give back to his communityI give