Recipients of the Alive to Strive Grant
“My name is Carol-Ann. This is how the Alive to Strive fitness grant program has touched me.
When I was diagnosed with kidney disease in 2012, my energy level and physical condition were so poor I could not walk from the Ottawa Senators parking lot to the entrance of my beloved team’s arena door. Kidney failure followed in 2013 due to pneumonia and the influenza virus. I started emergency hemodialysis at the General Campus of the Ottawa Hospital in February. By the time I was released, I was 50 pounds lighter due to the removal of the body fluid my kidneys could no longer filter.
Although hemodialysis was life-saving, the process took its own toll, leaving me anemic and weak from the low blood pressure inherent in the process. It was not until the miracle of Peritoneal (PT) Home dialysis in September of 2013 that I had any hope of a return to independence and wellbeing. Once I was stable on the PT regimen, the home dialysis social worker talked to me about an exciting program called Alive to Strive.
The program offered an opportunity to begin guided, regular exercise. I qualified to receive personal training sessions and a gym membership in January of 2014. Marie-Eve Chainey met with the trainer to ensure that he understood my limitations and could design a suitable personalized workout. She shared her considerable experience and provided online reference material, both of which proved very valuable to both my trainer and I. My trainer worked with me for 8 weeks, gradually increasing my activity level and general level of fitness. After the sessions with the personal trainer were completed, I continued on my own at the gym three times per week.
The call came for a paired exchange transplant opportunity in December of 2014. My physical condition virtually guaranteed my acceptance for and recovery from the transplant. I received my new kidney on December 11, 2014. This amazing gift was made possible by my dear sweet sister, Marilyn. She was not directly compatible with me, so she and her husband Steve flew to Vancouver to make her donation to a recipient there. Her donation allowed me to receive a kidney from a compatible donor, who in turn traveled to Ottawa from parts East. I will be forever in their debt…
On the three month anniversary of the transplant, I am back at the gym walking 4 to 5 miles several times per week, getting back to my former fitness level. I am learning to cross country ski, and have been skating on the canal. The financial, and more importantly, the moral support provided by the Alive to Strive fitness grant program has made an incredible difference in my quality of life, both before and now after the transplant. It was an enabler for a better physical and mental life.
I need to acknowledge the love and support of my family on this journey, without which I would never have survived. In particular the love and attention of my husband has kept me from those dark places where prolonged illness can lead. He kept and continues to keep the sun shining on my face and my spirit! I am so blessed to have such an amazing soul mate….”
Kim Aziz, now 55, grew up just outside of Charlottetown on Prince Edward Island. She went to the University of New Brunswick, where she obtained an undergraduate degree in civil engineering. She then moved to Ottawa to pursue a master’s in structural engineering from Carleton University. It was during these early years that she was diagnosed with kidney disease.
“I was in my early 20s when I found out. I went to see my doctor and they thought I had gallstones. After a few tests it was evident that this was not the case. Shortly thereafter, I was told I had polycystic kidney disease,” recounted Kim.
Polycystic kidney disease is a genetic disorder that causes multiple cysts to form in the kidneys. Despite being diagnosed at a young age, Kim didn’t begin having any problems until the age of 37. Four years later, at the age of 41, Kim had reached 0% kidney function, and needed to be put on dialysis.
“My daughter, Surraya, was 11 at the time, and was competitively dancing all over Canada, the United States and abroad. I remember learning about the different types of dialysis and thinking to myself peritoneal dialysis is for me—I can still travel, take care of my daughter and work. I didn’t want to lose my independence,” she explained.
Kim was on peritoneal dialysis for three years, following her daughter to competitions all over and continuing to work as a structural engineer for the Federal Government.
“I have watched hours upon hours of dance competitions with a bag of fluid between my knees, I have drained on trains and taken my dialysis cycler with me on trips. When I was working, I would fly to Calgary where Baxter would ship my fluid, and I would drive with my fluid from Calgary to Vancouver inspecting bridges. It wasn’t easy, but I did it,” Kim said.
In 2007, there were complications surrounding her peritoneal dialysis treatment, and she had to begin home hemodialysis. Kim took the training to do nocturnal home hemodialysis, but shortly after began her treatments during the day.
“I found it tough,” she remembered. “I was on dialysis five to six hours a day and I was not able to get out as much. It was a darker time of my life.”
In 2013, at the age of 51, things started to look up for Kim in a big way: she received a kidney transplant!
“I remember it like it was yesterday. My parents were visiting me at the time from PEI. I was dialyzing when the phone rang, and the doctor said they had a kidney for me. I thought my mother was going to fall on the floor when I told her. I then called my daughter who at the time was going to school in Toronto, and she couldn’t stop crying. It was a happy time.”
Kim’s transplant was a success, but the new kidney was not eager to “wake up” and start working. Kim was in and out of the hospital a great deal in the months following her transplant, but her team of doctors never gave up. Six months and eight biopsies later, Kim’s kidney started to function.
“I couldn’t believe it when my urine output suddenly started to increase. So many doctors has gone to bat for me, had never given up on me. Especially Dr. Zimmerman—I would not have a kidney today if it was not for her,” said Kim.
In October 2013, after her transplant, Kim joined the Let’s Get Moving group. Being a peer-support volunteer for the Kidney Foundation for many years, Kim has always found benefit in speaking with others who have kidney disease. She was also looking for a way to get out of her house and get active.
“I like the classes because the instructor adapts the program to your personal needs. I don’t have the confidence to go to the gym or an exercise class, but at the Let’s Get Moving group everyone has the same issues and we are able to talk about them. I have made some good friends through the group.”
Last year, Kim participated in the Alive to Strive race with the goal of walking the 1K. This year, she plans to complete the 5K surrounded by both family and friends, including her daughter, Surraya.
Kim Aziz is a mother, a fighter, a kidney transplant recipient and now the 2015 Race Ambassador for the Alive to Strive Race! Cheer on Kim and her team “Mama K’s Kid(neys)” at the Alive to Strive Race on Sunday, April 26.
“Eight years ago, I received a heart transplant,” said 68-year-old John Quinte, sharing his story of how he became an Alive to Strive grant recipient. “I’d been sent home from the Ottawa Heart Institute and told to get my affairs in order. I thought — this is it; but a heart became available and here I am today.”
John’s experience with kidney disease is directly tied to that event. Six years after his transplant, he began to experience renal failure — the effect of the anti-rejection drugs he had been taking to keep his heart pumping.
“The team at the PRI [Progressive Renal Insufficiency] Clinic at the Ottawa Hospital told me that they wanted me to lose weight and they wanted to help pay for it.”
They put his name in for an Alive to Strive grant to see if he would qualify, and the rest is history.
Grant facilitates dramatic changes
John received a personalized training grant in 2013 that provided him with a free membership to a local gym of his choice. As a first-time grant recipient, he was eligible for personal training sessions, which equipped him with an understanding and the confidence to achieve his personal fitness and active lifestyle goals.
“I’m already burdened with drug expenses. At first it was unbearable. I remember I went to the pharmacy in Ottawa to fill my prescriptions after my transplant — prescriptions I needed to fill — and the bill came to $3800,” he said, his voice still displaying disbelief at the total.
The Alive to Strive grant removed the burden of yet another expense and facilitated John dramatically improving his health. In fall 2014, he received a second grant. He strategically chose a gym membership covering late October until April, so that he can capitalize on outside activities (such as walking) during the summer months. He goes to the gym a minimum of three times a week and applies the things he learned from the training sessions covered by his first grant.
“I feel much better. I’m down to about 245 pounds,” he said, explaining that at the time of his heart transplant he was a little over 300 pounds. His health providers would like to see him get down to about 210 pounds, a trajectory he is well on his way to achieving.
“This is definitely available to me because of the grant,” he said. “I am so grateful.”
Strength to face whatever the future holds
John is not out of the woods yet. He has been told if his kidney function drops below 15%, he will need a kidney transplant. The lowest it has gone down to-date is 17% and on his last visit, he was encouraged with a result of 21%. His next visit in May will determine whether this is a sign of recovery or if it was a fluke because of some other factor.
In the meantime, he continues to move towards his health goals and hopes his efforts will enable him to save his kidneys. Whatever happens, he will cross that bridge when he reaches it — encouraged by a good network of people, and his wife in particular.
“My wife is my support system,” he said, adding, “There are a lot of support systems. The Heart Foundation is a support system. The Kidney Foundation is a support system. But my wife is the one that is at me, telling me ‘you’ve got to do this for yourself’ — and she’s right.”
Christine’s health problems began at a very young age. After being diagnosed with Diabetes mellitus type 1 at age 10, within a very short period of time she began experiencing problems with her eye sight. By the age of 21, Christine’s kidneys began to fail. Over the next 10 years, Christine’s kidney failure progressed very slowly, she experienced severe swelling in her legs and was prescribed diuretics. Christine was in her late 30s when she reached stage 4 kidney failure and was referred to a nephrologist at the Ottawa Hospital. Over the next 3 to 4 years, the swelling in Christine’s lower extremities became increasingly worse until she could barely walk and began to experience difficulty breathing. Her health problems started to take a giant toll on her life. Her reduced mobility and depleted energy level caused her to miss a great deal of work and she could no longer do the activities she loved so much, such as Christmas shopping. At age 42, Christine progressed to stage 5 kidney failure and she was told that she would need to go dialysis.
In January 2013, Christine was placed on a multiple transplant list to receive a kidney as well as a pancreas. This past June, she began home hemodialysis. After meeting the home dialysis team at the Riverside Campus, Christine voiced her interest in joining a gym to improve her overall health. However, after being off work for the past 12 weeks, the possibility of paying for a membership seemed far off. The team then told her about Alive to Strive, and soon after Christine received a six-month gym membership, in addition to 8 weeks with a personal trainer.
It has been two months since Christine began working with her personal trainer—an experience she really enjoyed. She has begun to feel much stronger and has a great deal more energy. Christine also has the support of her friends, they motivate each other to go to the gym and go for walks around her neighbourhood. Christine also plans to take part in the 5 km walk/run as part of the 2014 Alive to Strive Race day.
Michel has lived with Focal segmental glomerulosclerosis (FSGS), a rare disease that attacks the kidney’s filtering system, his entire life. First diagnosed at age 14, Michel is not the only one in his family who is affected by this hereditary form of kidney disease. His brother, father and grandfather all live with the disease.
Michel first began hemodialysis at the age of 18. After a year and a half of travelling back and forth from the Ottawa Hospital’s Civic Campus, Michel received a kidney from his mother. One year later, the kidney failed and he started back on dialysis. Michel subsequently spent the next 13 years on hemodialysis. During this time, he experienced ups and downs with his health, including hyperparathyroidism that caused him to experience severe pains in his legs that limited his mobility and forced him to leave his job.
Despite living with these difficulties, Michel was blessed with the arrival of his three beautiful children: his daughter Kayla (age 13), and two sons Christian and Alexander (age 3 and 2, respectively). His children marked a turning point in his life. Michel realized that he wanted to be around to see his children grow up, and decided to make a change in his life. After speaking with the nurses at the hospital, Michel knew he needed to get back in shape in order to have the best chance possible with a transplant. Last April, he was contacted by “Alive to Strive Kidney Fitness Project” and shortly after received a six-month gym membership. Two months have already passed and Michel says that going to the gym has given him the energy to do things he hasn’t done in years, such as climb the stairs without being winded, walk for longer distances with little leg pain, and play with his children. He is even going back to work after being on medical leave for the past three years.
Without Alive to Strive, Michel does not think he would be in the same place he is today. Not only is he physically stronger, but he has better self-esteem and a much more positive outlook on life, “Like with any disease, you have to stand up and say you are not going to let this take over your life, you have to fight back, he explained.” For Michel, Alive to Strive have given him much more than a gym membership, they have given him his life back.
Diana Aiello is our Race Champion for 2013. She really lives up to that title. She has been working hard on her health over the last months, and she is a true inspiration for people living with kidney disease. In 3 months, she lost 23 pounds and 20 inches. Here is her story…
In 1992, Diana, 21 years old at the time, was diagnosed with IGA nephropathy. Over the years, she lived with her disease. Working as a phlebotomist in a walk-in clinic, she enjoyed life and tried to live as normally as possible. Diana got married at the age of 32 years old, and the couple welcomed a beautiful daughter Joleen, who is now 10 years old. In 2002, her kidney functions decreasing, she had to stop working and eventually in 2004, she started dialysis. A year later, she had the chance to receive a kidney transplant. But unfortunately, the surgery didn’t go as planned, and eventually, the transplant was declared unsuccessful. Diana had to go back on dialysis, until 2010. The peritoneal dialysis didn’t work for her anymore. She then turned to nocturnal hemodialysis, which made her life more manageable, especially as a wife and a mom. And then, by talking with the nurses, she heard about a woman in Ottawa who is also living with a chronic kidney disease. This woman, Marie-Eve Chainey, is still going to university, is training and is a great athlete, and she is helping other people! That is also how Diana found out about the Alive to Strive fitness grant program. She says that this woman’s story really inspired her. She then decided to apply for the grant. After receiving it in August 2012, she immediately started to train at The Athletic Club, working hard with her trainer for the first 3 months, and then keeping up the good work with her year-long membership. She describes her experience as a grant recipient as life-changing. “I feel like a different person. I have more energy, my head is clearer, I have more drive. I am happier. I use to put things off all the time before. My social life is better. It changed my whole world.” And those benefits are also improving her relationship with her daughter. Like any patient on dialysis, she lost her muscle mass over the years. Her training helped her regain muscle mass, and she now enjoys going on bike rides or for walks around the neighbourhood with her daughter. Diana also mentions that in small details of everyday life, like picking things up (such as boxes of supplies for hemodialysis), she feels stronger and independent. She doesn’t have to rely on other people. Those wonderful results didn’t come out of the blue. Diana started her training by hitting the gym 5 days a week, doing cardio, weightlifting, yoga, attending Zumba classes and going to the pool. She also adds that she is now more conscious of her eating habits, helped by her trainer. During the same period, she joined the PEER support group. She enjoyed sharing her experiences with others living the same life, and she was happy to tell them about her success with the grant.
Recently, she was written off the transplant list. “It was hard”, she says. But Diana is truly a positive, inspiring woman. She has new goals for herself now. “I’d like to get fit and have a longer life for my little girl. She is my life and what I live for.” She adds: “Marie-Eve’s story inspired me and still does. I wanna do more.”
Hélène Lavoie found out that she had kidney disease many years ago. She kept on living a somehow normal life, working in schools as an educational assistant, helping kids with special needs on the autism spectrum. She always was eating well, walking every day, trying to relax as much as possible evenings and nights. But her kidney functions kept decreasing, to a point where she was forced to quit her job, and stay home. Dialysis was just around the corner… That took a beating on her moral. But Hélène stayed positive. She was convinced by a friend to apply for the fitness grant program of Alive to Strive. She didn’t want to apply at first, thinking that some people might need it more than she did. But the recent decrease of her health, her professional life drastically changing, she decided to give it a shot… and she was chosen. Even before she applied for the grant, she was volunteering a few hours here and there for the Alive to Strive Race. She really believed in the cause. As a new grant recipient, she started to exercise more, making her way through a stronger body, a better health. It really brought her desire to re-appropriate her life and her strength. Supported by friends and by her daughter, she even decided to walk the 1K at the Alive to Strive Race, on April 28th 2013. “Receiving this grant and participating in the Alive to Strive Race in April gave me hope. I felt a sense of belonging and community. I was not alone, and I realized that we are many battling for the same cause,” reflected Hélène. On this special day, she walked side-by-side with a long-time friend of hers, who decided to give her one of his kidneys. What an incredible and inspiring story! So, in May 2013, she received her new kidney, and is now a new woman, with much more energy. She enjoys every single day that she has the privilege to live, saying that the fitness grant has greatly contributed to give her the extra push that she needed to be well prepared for the transplant. It certainly also did a major difference in her recovery after the surgery. Helene is of course a strong believer of taking care of her body, making good choices when it comes to nutrition and exercising daily. Her new life as a transplant patient is now on the right track. “When we receive such a gift, like the kidney donation or the fitness grant from Alive to Strive, we must work hard to honor and recognize these incredible people who believe in the gift of life,” added Hélène.
A kidney transplant is a miracle, however it does not guarantee a full recovery or a return to your old way of life, something our 2014 Alive to Strive Race Ambassador knows from firsthand experience.
Hélène Lavoie has been fighting kidney disease for a long time.
When her kidney function showed signs of failure, “I blocked it out,” she said with a laugh. “It started slowly. Then I had stress with my job and that didn’t help.”
Close to two years ago, she received a kidney transplant from her long time friend, Marcel Duguay. The kidney transplant has given her a new start and the hope for a better life. While she is feeling much better now, she had a few second effects from the anti-rejection drugs and continues to face challenges with her health.
“Some people have the kidney transplant and the disease is gone. I’ve also been living with diabetes,” she explained. “For me, it’s a lot of things. I’m tired, not as bad as I was, but not solid enough to return to work.”
A lonely diagnosis – Alive to Strive provided support
Hélène admitted that she didn’t know a lot about kidney disease when she was diagnosed with kidney failure and that she didn’t have a lot of support at the start except for her daughter, Krystel, and a few friends.
“Alive to Strive helped me see that there were other people like me. It’s one thing to be sick — you get help from a medical doctor — but no one helps you emotionally. We seem to forget that there are psychological effects. Alive to Strive is a good group. You see that you’re not alone.”
Hélène is a past recipient of an Alive to Strive fitness grant, which are funded through revenues from the annual race.
“It helped me a lot,” she said, explaining that her illness forced her onto sick leave so she didn’t have a salary. “I wanted to train so I could be in the best shape I could be, in case I could have a transplant.”
She also explained that going to the gym provided a crucial social outlet and motivation.
Proud to give back and to help others
Hélène’s enthusiasm, positive outlook and energy influenced her selection as ambassador for last year’s race. It also affirmed her desire to give back to all those who had helped her. Accepting the role was her way of showing her appreciation.
“I wanted to build a big team and bring people to the race. It was a mission for me — to talk about kidney disease, the race, to help others and to promote it. I was very proud.”
Although her time as the official race ambassador is over, she continues to spread the word.
“I always want to give back. I put the race pamphlets everywhere. Wearing my t-shirt is also great. It’s a nice way to promote the race. People come up to me and ask me what it is.”
When asked how she would pitch the Alive to Strive Race to someone who has never heard of the event, Hélène doesn’t miss a beat.
“I start by explaining about Alive to Strive — its purpose to gather money to help more people through grants. I always make sure to say that the money goes directly to the people in need. I talk about kidney disease and try my best to develop peoples’ awareness.”
Hélène’s 5kg team (Hope) and her kidney donor will once again be at this year’s race. Like with many others, the event has become an annual tradition and source of pride in how far she’s come.
“It’s fun to get together. You feel good,” she said of the race. “I’m grateful I had the grant. I promote the race so that we can raise money and we can give it to others. That’s the purpose.”
Caleb Lewis is our race champion for 2012. He received is fitness grant in March 2012, being the first recipient of the Alive to Strive program. He has been hitting the gym ever since. Here is his story…
Caleb was born with undersized kidneys, which shut down when he was twelve. He received a kidney transplant in 2001, but unfortunately it failed two years later. He’s been on dialysis ever since as he awaits another transplant. He works in Ottawa for a parking company, and being sedentary most of the day didn’t help him feel good, physically or mentally. Caleb has been in a relatively good shape most of his life, despite his kidney disease. But dialysis made him lose a lot of weight, a lot of muscle mass. Applying for the grant, as well as receiving support from his family and the Alive to Strive Kidney Fitness Project, helped him set goals for himself. He wanted to improve his overall life. He says that the past year (2012), since he received the grant, has been a life-changing year for him. He accomplished most of his goals, in terms of health, finance, personal and professional. Some of his achievements are gaining 15 pounds of muscle mass, meeting new people, working more. Caleb says that since he started going to the gym, he feels more upright, ready to go, early in the morning. He does his hours at the job, and heads up to the gym right after. This routine of being more active as made him able to last throughout the day. “I hope that people realize that going in a sedentary lifestyle doesn’t do them any good.” He also adds that going to the gym brought even more than better health to his life: he met his girlfriend Marie at the gym! Caleb truly thinks that his supporting girlfriend, sister, brother-in-law and nieces play a big role in his motivation. His sister Natasha raised a lot of money for the 2012 edition of the Alive to Strive Race. His brother-in-law Sean is incredibly supportive of Caleb’s efforts to be healthier. Caleb’s nieces, Hannah and Holly, play a very important role in his life. He wants to get fit and be healthy to be able to keep up with them as they grow.
“I am happy to be a model for other dialysis patients. Once I am fitter I will be happy to help as much as possible this organization which has given me so much”, says Caleb Lewis.
Catching up with Caleb
Ottawa resident Caleb Lewis was Alive to Strive’s race ambassador in 2012. We recently caught up with Caleb to see what is keeping him busy these days!
Back in 2012, Caleb was not moving very much because he was doing home dialysis, a treatment that requires long hours attached to a machine. With the encouragement of Dr. Deb Zimmerman, he applied for and received a fitness grant from Alive to Strive for a membership at a local gym.
Being named the race ambassador that same year gave Caleb a boost of encouragement to reach and maintain his fitness goals. On race day, Caleb remembers the support of everyone behind him. “Race day was awesome. Alive to Strive put so much behind me, Marie-Eve Chainey and everyone at the organization. My family and friends believed in me and stood behind me,” Caleb says. He remembers how his two nieces met him near the finish line and ran with him to the end.
Nearly three years later, Caleb continues to stay active and get outdoors as much as possible. He often hits the nearby slopes to go snowboarding, and hikes with his girlfriend in the Gatineau hills. At work, he’s on his feet most of the time so he keeps moving throughout the work day. A Nike wristband helps him to keep track of his energy output every day.
Caleb recently learned he was awarded a second grant from Alive to Strive. In a few weeks, he is looking forward to beginning a TRX class at a local gym, which will challenge his strength and muscular fitness!
Caleb reflects on how that initial fitness grant gave him the push he needed to include physical activity in his daily life. He knows firsthand that it isn’t easy at the beginning, that it is hard work. “Start slow and work your way up. You won’t get there overnight but work hard and it is worth the pain. Once you reach your goal, it is smooth sailing from there.”
Mohamed is a full-time college student in business. He suffered from spontaneous kidney failure in August of 2009, and started dialysis in October of that same year. He was in his early twenties at that time. Living with a kidney disease, as well as being on dialysis, is quite a life-changing challenge. For young people, as for older adults, it can take a toll on your morale. But despite these setbacks, after 3 years of feeling slowed down and sluggish, Mohamed decided to get back on track. With the help of the Alive to Strive Foundation, he started a journey on a new path, where his disease is not going to hold him back. “I’m going to do what I want to do.” Being a grant recipient from the Alive to Strive Kidney Fitness Program, he now goes to the gym as much as possible. After my training, “I sleep properly, I am more energetic, I am more focused. I kind of feel like my old self.” This young gentleman, now 25, is enjoying his new self by investing his regained energy on his future. There are “so many things I want to do. I want to travel.” His advice to young people living with kidney disease: “Don’t let it stop you. You can still do what you want. It is how well you plan it.”
David Presley is a newly retired man from the food concession industry. He travelled across Canada for 45 years working in that field. He and his wife are both past Presidents of the Central Canada Exhibition Association, also known as the Super Ex. Since November 2007, he was diagnosed with a kidney disease, and he has been on dialysis since then. He is still waiting for a kidney transplant. Over the years, he has been an active volunteer with the Kidney Foundation of Canada, trying to raise awareness for organ donation. He says that over the years, the nurses, doctors and other staff members at the dialysis unit have won his praise. Also living with diabetes, and like many other people living with kidney disease, David struggles with other health problems, such as back pain. He was recently chosen as one of the grant recipients with the Alive to Strive Kidney Fitness Program. Being honest, he says that at first, he faced some «gymtimidation». He was scared, and was not too sure about this program. With now more than 20 training sessions behind him (as of March 2013), he says: «It’s growing on me». He had the chance to meet Becky, his trainer at Vitality Fitness in Kemptville, and says that she helped him overcome his fear. “She’s good and understanding”. With the help of Becky, he now foresees, in a couple of weeks, to go to the gym on his own, working out by himself. Is he feeling some improvement on his health? Indeed, yes. “My legs are getting stronger, I lost 6 pounds. I recommend it (the Kidney Fitness Program)”. His advice to feel comfortable and to get the motivation: “Choose a gym and a trainer that really suits your personality.” Aside from the benefits on his health, he also mentions that being a part of this program, going out to the gym, and working with people that understand your condition, doesn’t make you feel like such an outsider. Moreover, showing up every week, despite his disease, has earned him admiration from other people there. That certainly helps to boost your morale.