Your Story Matters
Meet the faces of those who have shaped who we are. Some have given the gift of life, while others would not be here without it. Let these inspiring stories reveal the significant impact that organ and tissue donation can truly have on a life.
My name is Anne-Marie and I just turned 40. Without a heart transplant, I would not have made it this far. I was born with a complex congenital heart defect. I had open-heart surgeries as a child but my doctors had warned my parents that these surgeries would not cure my problems. My heart would eventually start to fail with time.
Although I had some very healthy years, I also had a lot of medications, surgeries, and hospital stays It’s in early 2015 that my heart failure progressed to an advanced stage. I had really bad fluid retention, my heart arrhythmias could not be controlled, and I was so fatigued that it had become difficult to walk for longer than 10 meters. My husband had to carry me everywhere. This is when my cardiologist told me that my heart was in such bad shape that I didn’t have many years left. My only option was to be evaluated for a heart transplant. I needed to be hospitalized during the wait because my heart needed support to work as well as it could until the transplant. After months of hospitalization, I had my heart transplant on September 17, 2015. I remember feeling such a strong mix of emotions that night: a feeling of hope and excitement for the future and a feeling of sadness and guilt because there was a family somewhere who had lost someone and it was this loss that gave me a second chance. I think about my donor every day.
There were some complications after my heart transplant. I had to stay on a heart and lung machine for 4 days after the surgery. Once the surgeons could safely remove me from the machine and closed me back up, I suffered a hemorrhage in my head. Because the blood was pushing against my brain, the surgeons had to perform an emergency craniectomy (removing the right half of my cranium to remove the blood and release the pressure against my brain). That half of my cranium was placed back on my head 3 months later.
Needless to say, my real recovery only started once my head was put back together. Completing the cardiac rehabilitation program and going to the gym was so freeing. It’s so crazy to be able to run, sprint up the stairs, or travel with my husband and not need him to carry me. I have energy and I feel like myself again. When you are sick for so long, it’s difficult to be yourself.
Since my transplant, I can spend time with the people I love without secretly wishing I was lying in my bed; I am back at work, as a teacher; my husband and I have been travelling and I’ve had the opportunity to participate in the World Transplant Games.
It has been over 3 years since my transplant and I am forever grateful to my organ donor for giving me more time with the people I love, my medical care team, for saving my life time and time again, and my family and friends for always making me feel like I don’t need to worry about a thing because they are right there with me through it all.
Anne-Marie - Heart Recipient
Adam & Rick
I like to touch a jewelry cylinder hanging around my neck when I speak about organ
and tissue donation. This cylinder contains my son Adam’s ashes. Touching Adam strengthens me. I find my voice, his voice.
Adam was fond of his name, as he was identified as a girl at birth. His mom intuitively knew she was carrying a boy; we called him Adam while still in the womb. We named our child Rebecca Adam. Rebecca revelled in the boy’s middle name. All tomboy! Batman and Montreal Canadiens’ goalie Carey Price were his two heroes; a game and position Adam loved.
My son’s final five years of transitioning unfolded during his late teens and early 20s. His transition dovetailed with another epic journey, an epilepsy disorder that repeatedly knocked him to the canvas. Adam bounced back up every time, enduring two brain surgeries, the last one promising in 2015. His brain scans looked like Canada Day fireworks. Flares pointed to a trigger point deep within the brain. Removing that brain tissue might control the seizures.
Adam said surgery was a “no brainer”. He wanted his drivers’ licence back, play hockey,
become a boy.
Two months after his surgery, I was in California visiting my sister. Adam’s mom called. Adam had a seizure in a hot tub, was resuscitated and rushed to hospital. When my sister, a nurse, dropped me off at the airport, she grabbed my arm. ‘“Hon, we want Adam to be well. But, if it is not to be, he is a young man with healthy organs. I know Adam wants others to have this gift from him.”
For the entire red-eye flight home, a good angel and a bad angel competed for my son. I root for a miracle. I plan a funeral.
Back home, I joined a 36-hour vigil. Adam’s Mom and I are separated but still lovingly co-parent. I bring up organ and tissue donation. Mom is not ready for that discussion. On the final night of our vigil, with Adam laying between us, she tells me she knows what Adam wants. At 16, when his driver’s licence came, he asked about the organ donation box. He said absolutely he would donate his organs if an accident happened. He is a registered organ donor. There was no hesitation from Adam when he chose to save lives by registering as an organ donor. There would be no hesitation from us. I knew the long list of people waiting, some who die. Judging no one, I never understood burying or cremating healthy organs and tissues.
Adam made me a better parent. He’s reminded me that I am still his Dad and he’s now my teacher about life. I understand how important it is to know your loved one’s final wishes because family consent is required even if someone is a registered donor.
Three weeks after Adam died, Trillium Gift of Life Network wrote that four people would live because of Adam’s generosity: “An adult female with extensive liver damage. Two adult women with end-stage renal disease, ” began the letter. My son’s final act is overwhelming. Our grief is permanent because our love for Adam is permanent.
The gratitude from the donor recipients pushes me through more walls of grief. We watch as many of Adam’s friends register as donors. Scars circle to love. We smile when we read a fourth life has been saved. Our son’s brave, beautiful heart has been gifted to a man.” John Dickhout, that man, sleuthed his donor identity and we have become good friends.
(Soar, Adam, Soar, Rick Prashaw’s book on Adam’s life, Dundurn Press, is available locally at several indie bookstores and at www.rickprashaw.com or Amazon, Indigo sites.)
Rick - Donor Father
Glynis & Jeanne
Kidney Recipient/Living Donor
My kidney transplant story is in recognition of the donors who do this insanely scary act and go on as usual while creating this whole new life for another person. It’s a testament to the human spirit in all its glory.
I have been living with Lupus since the age of eleven. I am very accustomed to the hospital, to procedures, to surgeries and to pain. I knew my kidneys were affected, as were my bones, my nervous system and my blood. Lupus has spent the last 27 years attacking my body.
And so, for years I lived on a renal friendly diet (managing sodium as a teenager is quite a challenge!) and was very aware that one day in the future, I would need dialysis and/or a kidney transplant. Lupus affected my kidney function every time I went into a flare. At the end of 2016, my kidney function was lingering around 12-13 %.
By the spring of 2017, I had three potential donors who were in the process of being evaluated. My husband was not a match and my mother had kidney stones. My best friend from high school, Jeanne, was a match but she was screened out because she was on blood pressure medication and was over the BMI limit.
The entire process was a roller coaster ride. It’s about waiting for results. And it’s extremely devastating when you get the news that it’s over. I was crushed but I hid my disappointment. The possibility of a pre-emptive transplant was out the window. The possibility of transplant was not even certain. Realizing I had no potential donors and was feeling worse than ever, I now had to refocus my mind on dialysis. I began peritoneal dialysis (PD) at an eFGR of 9 (kidney function %) in August, 2017.
The only thing you can do is continue on with daily life as best you can. I was feeling completely exhausted all of the time. I was not eating and not sleeping. Jeanne is truly an amazing person. In the meantime, she set out to get back in to the program as a potential donor. So from April to August 2017, she lost the weight she needed to and her family doctor took her off the blood pressure medication. She contacted the donor team and asked to be re-evaluated. She called me with the good news and I was stunned.
The day of surgery, my creatinine was 1250. It was my first time going into surgery afraid, not for me, but for Jeanne. I watched as they rolled her to the OR and I wanted to call the whole thing off. Four hours later it was my turn. My husband kissed my hand and we both said ``Let’s do this``. That night I produced a little over 13 Liters of urine. This was a super kidney, we named her Gloria. Since, I feel amazing. It actually takes getting used to waking up every morning and peeing! Jeanne is the hero in this story, as are the countless donors who walk among us.
Glynys - Kidney Recipient
Jenn, Filomena & Tony
Living Donor/Liver Recipient
I believe in fate and that everything happens for a reason…
I had been friends with Filomena Pasqua and her family for about 20yrs, which would include dinners and gatherings on a regular basis. One evening in May of 2015 I was visiting with Filomena’s parents, having dinner and chatting with her father Tony Pasqua who had been going through treatments for liver cancer.
That same day he found out this best chance for survival was a living liver donor. He and the family explained to me what was involved, how difficult it can be to find a donor and the struggles he will soon face while waiting.
Filomena and I decided to take the dog out for a walk and chat some more…. A few mins in I looked at Filomena and said I’ll do it. She looked at me stunned but also knew when I have made a decision there isn’t much you can do to change my mind.
I submitted my documents to the UHN within 24hrs and within days I was told I could possibly be a match. Weeks later I began my journey, started with multiple medical tests to see if I could be a match then low and behold, with all odds against me I was a match and we were scheduled for surgery.
On Oct 7th 2015, at the UHN Toronto General Hospital we had our Liver Transplant surgery. Everything went extreme well, they took 75% of my liver which is more than usual but I had a larger liver and thought would be beneficial to take more.
We were both recovering on the same floor, was even able to take walks together and within a couple of weeks we were back home in Ottawa!
Our surgery was over 3yrs ago now and we are both doing very well, we continue to maintain a strong relationship and reminisce about the surgery and our time at the UHN.
Since the surgery Filomena and I have been dedicated advocates for organ donation, even creating a group called Ottawa Donors. We host the Give Gala in support of the UHN as well as small events in between.
Being a living liver donor as truly transformed my life, given me an unexpected purpose and I am truly grateful for it. If I could donate my liver again I would, what’s a scar to saving someone’s life?!
Fate brought me to the Pasqua home that day Tony found out he needed a living liver donor and fate made me his liver donor. Everything worked out as it was meant to!
I encourage everyone to consider being a living organ donor!
Jenn - Living Liver Donor
David & Elizabeth
My 63-year-old husband David had a hemorrhagic stroke one morning at home. I did chest compressions, paramedics restarted his heart, but by the time we got to the hospital 70% of his brain was destroyed by a brain bleed. As the doctors put it, “His condition is incompatible with life.” But he had died in my arms, so that was not a shock. Our children and his two closest friends gathered to say goodbye. When I suggested it was time to turn off the machines that were keeping his body alive, I was gently approached by the two Trillium Gift of Life nurses who asked if I would consider giving permission for his organs to be used.
David had not registered as a donor. Strangely, although he was a medical ethicist, we had never talked about organ donation. But his goal in the latter part of his life was not for material success or fame, but to be a kind person. So for me there was no question. What followed was a long and detailed interview with the two nurses during which they asked many questions about his medical past. They were very patient and kind and understanding. How hard it must be to talk to family members at the worst moments of their lives. At the end of the interview they told me that before any surgery was done, the medical staff would pause in the operating room, and any thing that we wanted to say about David would be read aloud. That was comforting.
We said the final goodbye. But we left a warm body that was still breathing with mechanical help. That was hard.
Over the next night and day, I received updates from the Gift of Life transplant coordinator as tests were carried out to determine which organs could be used, and answered yet more questions. He was finally officially declared dead over 36 hours after the stroke, and the surgeries began.
By the second morning, his lungs and liver had been transplanted into two different people. Despite the fact that he was nearly blind, his corneas were used to give sight to two others. The team also collected skin and bone to be stored for use later on. Most amazingly, the pancreas of a man with Type 2 diabetes would be used to collect islet cells for the Edmonton protocol treatment for people with Type 1 diabetes.
To be honest, none of this mattered to me at the time. It did nothing to ease the grief. Gradually though I have met many wonderful people who are alive because of transplants from deceased donors. I now volunteer with the Gift of Life organization to help spread awareness and information about organ donation.
David was gone; he no longer needed the organs and tissues. For me, the real heroes are those people who are on the waiting lists, those who have received transplant, and their families and the medical teams who help them. I still don’t know if he would have wanted me to say yes, but it doesn’t matter. His body gave the chance of life to others and that was David’s ultimate act of kindness.
Liz - Donor Wife
Inhale Life – Exhale Thanks
Breathing should be easy, and for most people it is.
I will never forget the first time I yawned post transplant. It surprised me so much I burst into a combination of laughter and tears. That was the moment I realized the incredible gift of healthy lungs that I had received. My lungs and chest expanded so fully that I thought they might swallow up my head. What an incredible moment! Then I realized I could not even remember the last time I had yawned. My lungs had been so full of fibrosis that shallow intentional breaths were all I could take. I had also been on oxygen 24/7 for the past several years. Oxygen tubing snaked through my home and went with me wherever I travelled.
I can still remember when they removed my oxygen cannula after my transplant. The nurse said, ‘you really don’t need this anymore’. Whenever my oxygen levels would drop all I had to do was take a deep breath and back up they would go. After living with declining lung function for more than ten years actually being able to take a deep breath was amazing.
It seems fitting that it was Donor Day that I actually received my Gift of Life, two beautiful healthy lungs. I had been waiting on the transplant list for almost a year.
Donor Day is more widely known as Valentine’s Day and my family and friends cannot think of any better gift of love than the one that I received. It gave me back my life and it gave me back to them.
The past two years have been full of new adventures for me; I have been to the top of the world…or maybe it was the restaurant at the top of the CN Tower, I had the opportunity to skate on the Canada 150 Rink of Dreams on Parliament Hill in honour of my Donor…even though I can’t really skate, I get to enjoy playing in the lake with the grandkids… which I had not been able to do with them before, I have been away to music camp…and I had not been to camp since I was eleven, I have taken some painting classes…still can’t paint but I am having fun trying, and I can sing again...something I love to do.
I have learned to embrace each day and have realized…if not today, then when.
Donors change lives. I believe that being willing to share with others is the kindest gesture we can all make.
All Donors are my heroes.
You can check at beadonor.ca to ensure that you are registered, or to register. Then remember to please discuss this with your family. I have registered!
Thank you for reading my story.
Karen - Double-Lung Recipient
Living Liver Donor
On June 4th 2018, I walked into the Toronto General Hospital wearing my favourite pyjamas and donated 60% of my liver to a young man in the end stages of liver failure.
Two months before, I’d never heard of a living liver donation, leave alone considered giving away my own “sliver of liver.”
It was Tuesday April 3rd. I’d returned to the office after a whirlwind work trip to Australia and a jet-lagged Easter weekend. I scanned through my emails. One stood out: “A gift of life: seeking a living liver donor for my son.”
It was sent by a colleague, whose son had been sick for 10 years with a rare and devastating liver disease. She’d learned that time was running out; the only option for him was a liver transplant, and his best hope was to find a living donor.
I instantly thought: “I can do this.” And then I thought of my husband with his all-consuming job, and my three kids under eight years old, and my work family, and I thought: “We can do this.”
After my heart made the decision, my brain caught up.
I closed my office door and researched the heck out of living donation.
That evening, the supper dishes still on the table, I pulled out my stack of papers and nervously asked my husband what he thought. He listened carefully and simply said: “go for it.”
By Thursday, I’d submitted every shred of medical history to the Toronto General Hospital’s Multi-Organ Transplant Unit, lined up a first assessment visit, and admitted to my boss why my door had been closed for the better part of two days.
On my first plane ride to Toronto, I stumbled into telling my seatmate that I was being assessed as a possible living liver donor. “It’s a wonderful gift, the gift of hope that you’re giving,” she said.
I thought a lot about that gift. Was I brave enough? Strong enough? If I were injured in surgery, would I feel regret? I grounded myself in research and in the hospital’s motto: Courage lives here.
A month later, after two intense assessment trips to Toronto and many more calls with the living donor coordinator, I got the call. I was approved. My recipient was approved. We had a surgery date: June 4.
And so, on the Friday before Mother’s Day, I had the gift — the strangest, most overwhelming gift —of telling a mother that I was eligible to donate to her son.
I met my recipient only once before the surgery, in a funky coffee shop in downtown Ottawa. I wondered how I’d recognize him, but it was easy with his slight frame, pale yellowed face, wan smile. The psychologist in Toronto said it was important to meet before I was hyped up on Percocet. It was important for him to understand my “why.” I asked him what he was looking forward to once his health improved. Tea, sunshine, running, returning to his studies. Tea, sunshine, running, studies: that became my why.
Three weeks later, I was looking up at the bright lights of the OR, listening to the easy banter of the surgical staff, and repeating my surgeon’s words in my head: “we are here to do something amazing, and our plan is that you will go on to do more amazing things in your life.”
I don’t remember waking up from the eight hour surgery. There’s a picture of me holding a greeting card with a little dancing dog on it, given to me by another living donor. I’m hooked up to every conceivable hospital machine, looking pale, eyes glazed, hair mussed.
In it, she’d written: “Can you feel it yet? The pure joy of saving a life?”
It took a couple days, but I felt it.
I felt it when my recipient walked to my hospital room, and I saw him in the doorway, looking exhausted but pink, no longer a shade of yellowy-grey.
I felt it each time his mother sent me a note to say that all is well; our liver - his liver -
is working beautifully.
I still feel it every time I see my scar, drawn on my
belly like a lopsided hockey stick.
My four year old is convinced that my scar is a kindness mark. She hikes up her shirt
sometimes, examines her tummy and points to the tiniest speck on her skin. See, she says, my kindness mark is beginning to show.
And the fellow I shared my liver with? He’s been back at university since September. He cooked supper for my family over Christmas: spaghetti with homemade sauce. He’s shy, and brilliant, and he’s pretty good at ping pong. And this Spring, I hope he’ll be drinking tea again, turning his face to the sun, and running -- on whatever path he chooses.
Meghan - Living Liver Donor
This picture was taken less than a year after I had a heart transplant. I’m on the left, sitting next to my little sister Emily. We were 14 and 12 years old. A year earlier, in June 2001, I was finishing my first year of high school in Gatineau and looking forward to going on my first end of year trip to La Ronde theme park in Montreal.
I first started to notice I couldn’t sleep. I was exhausted and would eventually fall asleep sitting up. I then noticed I was not able to go up the stairs at school without huffing and puffing for 20 minutes into my class. We had no idea what was going on. My mom brought me to the hospital. I struggled up the ER ramp and from there, things get foggy.
I remember waking up at the Ottawa Heart Institute surrounded by faces I didn’t know, telling me things about myself I didn’t understand and all I could think was “don’t look down”. I knew my body was no longer under my control. A machine was now in control for me. I wasn’t ready to see it yet. I wasn’t ready to find out my heart was dying.
It wasn’t long before I realized I wasn’t going to La Ronde. It wasn’t much longer before I felt I was ruining Father’s Day for my dad because we were stuck in the hospital. Shortly after that, Canada day passed. Then the summer was gone, and I was missing my first day of school. I started to worry I would miss Christmas and my birthday and when I thought of those things, I’d really get discouraged.
On October 15th, the Heart Institute had to send me home. I had been outside my province too long and would lose my health insurance. They set me up at home with batteries for my machine and a docking station to charge it. The machine was about the size of carry-on luggage and I was pretty determined to not have anyone see me. I felt weak and sad. I was upset that this memory was now going to infiltrate my home. But I was never afraid, and I never lost hope.
That same day, while playing Super Mario, I got the call. I burst into tears. That’s the first time I was scared. On October 16th after a long night of waiting, I had the heart transplant surgery. A few hours after, I woke up and walked around, free of tubes and wires. 10 days later I walked out. I’ve never missed a holiday, birthday or field trip since. Last year I celebrated turning 30 and went to the transplant games with my family. If someone I’ll never know hadn’t been a registered donor, I wouldn’t be here.
Laura - Heart Recipient
November 18 is my liverversary. On that date in 2015, I received the gift of life in the form of a gently used liver from a courageous stranger who has become my hero. Just one year prior, I was diagnosed with PBC - primary biliary cholangitis, a slowly progressive autoimmune bile duct disease which results from chronic inflammation of the small intrahepatic bile ducts. It was a disease unknown to me, but on my crash course to learning all I could I realized that I’d had symptoms for most of my 55 years. As I child I bruised so often my mother had me tested for leukemia. I had terrible itching and was advised to skip bubble baths and use all unscented soaps and paper products, and later in life diagnosed with eczema. What I thought was a year-round tan was hyper-pigmentation. And the excessive fatigue was surely from stress, aging and menopause, wasn't it? Apparently not. It wasn’t until I had difficulty recovering from a respiratory infection and developed jaundice that we began a deep dive into what was wrong. I was fortunate to have a smart team of doctors who ran the right tests and got me in to see the right specialist. While they prescribed a medication to slow progression of the disease, I was already approaching liver failure and my decline was rapid. After 3 months in hospital and with just a couple of days left in my transplantation window, my angel donor and a fantastic team of medical professionals gave me life. I am passionate about paying it forward by encouraging registration for organ, blood and tissue donation, and by educating & supporting others in a similar situation. And while it is a long shot for me to be an organ or tissue donor someday, I have maintained my registered consent and have advised my family of my wishes.
I blog about my transplant experience - the link is here: https://liverandonionsblog.wordpress.com/
Leslie - Liver Recipient
Dawson & Bettina
Kidney Recipient/Living Donor
Dawson was born with a condition that caused his kidneys to be underdeveloped we were able to avoid dialysis but at the age of 4 years old, he received a living donor kidney from myself. Everything was great until he turned 12yrs old. The transplanted kidney was failing and we were told that Dawson would be placed on the organ transplant waiting list and would need to begin dialysis. Dawson was on 10hr nightly peritoneal dialysis for almost 6 years, every night. Not an easy 6 years. There were many highs and very many lows. With every day that passed, Dawson’s kidney function and overall health was increasingly diminished. Finally, on June 27, 2018 the night before his high school graduation ceremony, we received the long awaited call that a deceased donor kidney was available for Dawson. So instead of receiving his diploma he received his life saving kidney transplant.
Now, 9 months later Dawson is still adjusting to medications, and to his new life. He is currently working part time, socializing and doing activities that at one time he couldn't participate in because of the abdominal dialysis catheter, but mostly because he overall was not feeling well on a daily basis. He now has energy, no pain and in general just enjoying life. However, the fight is not over. A transplant is not a cure but rather a better treatment for kidney failure than dialysis. The stress and worry are always still present, especially when Dawson attends his monthly hospital follow-ups. There is always a bit of anxiety associated with that as he waits for bloodwork results. And he strives to make sure he is doing everything right in order for him to keep his precious gift as long as possible. As for future plans, he would like to attend College but he doesn't know exactly what he wants to pursue at the moment. In the meantime, though, he and we are enjoying and accepting every day given to us as a gift thanks to the selfless act of his donor and his donor’s family. Thank you Donor!
Bettina - Mother & Living Kidney Donor
On a Friday evening in the spring of 2010 after a long work week, Debbie was rushed to hospital after she began throwing up black blood and noticing her stools were black. Spending weeks in and out of Ottawa General Hospital, Debbie underwent bloodwork, ultrasounds and MRI’s until she was finally diagnosed with a disease she had never heard of before—non-alcoholic steatohepatitis (NASH)—the most severe form of non-alcoholic fatty liver disease (NAFLD).
NAFLD begins when too much fat is stored in the liver, usually caused by a poor diet and lack of exercise. Unfortunately, Debbie was not only unknowingly living with this liver disease that affects 1 in 5 Canadians, but also presented many of the significant risk factors including being overweight, and having type 2 diabetes and high blood pressure. When NAFLD is left untreated like in Debbie’s case, scarring (cirrhosis) occurs, and liver cancer or liver failure can be not far behind.
“My specialist encouraged me to follow more holistic methods like eating healthy and getting active after I was diagnosed,” says Debbie. “Unfortunately, this all became nearly impossible once the toxins began to fill in my body.”
By the end of April in 2011, Debbie’s condition had worsened due to excess toxins building up in her body and affecting her brain (a condition known as hepatic encephalopathy). Her health began to deteriorate so much so that she was no longer able to work or drive safely. Eventually, her family decided that it was dangerous for Debbie to be living alone any longer and moved her in with her elderly mother.
In the meantime, Debbie’s specialist made prompt arrangements for her to see the Liver Transplant team at Toronto General Hospital. Debbie relied on her sister Cindy to take her to all of her appointments in Toronto that would determine if she could be put on a liver transplant list.
With her condition worsening, Debbie was placed on the transplant waiting list in just six months. Her family was told that it could take up to seven years for a deceased organ donor and encouraged to look for matching live donor within family or friends.
Despite her reluctance, Debbie eventually brought up the matter with her family and almost immediately, her youngest brother, David, had undergone all the tests and was determined to be Debbie’s match.
David's liver biopsy showed that he too had too much fat in his liver and was told that he could not be Debbie's donor until he lost 40 lbs and reduced the fat in his liver to zero. Over the next three months, David followed a closely monitored liquid diet to ensure he safely lost the fat in his liver.
Numerous biopsies and a couple of cancelled surgery dates later, David was clear to donate two-thirds of his liver to Debbie. The surgery was successfully completed on the 18th of April, 2012.
When surgeons removed Debbie's diseased liver, it was a solid mass of scar tissue. Debbie spent a week in the hospital recovering, and another month living close by for follow-up appointments. Her recovery had it’s ups and downs, having to return to Toronto twice over the following months to stretch out her bile ducts and alleviate the itching that excess bile was causing her.
"The first thing everyone noticed after my transplant was the colour of my skin—I wasn't yellow anymore," says Debbie. "My medication has had to get adjusted a couple of times due to complications like high blood pressure and kidney problems, but I'm now coming up on the 7th anniversary of my transplant, and I feel great!"
Only two months after her liver transplant, Debbie accomplished an incredible feat by organizing a team for the Canadian Liver Foundation’s Stroll for Liver in Ottawa. Alongside family and friends, Debbie raised $2,000 in only one week. This experience led her to meet many other transplant recipients with whom she shared her story, and made long-lasting relationships with.
Having been taken by surprise by her liver disease diagnosis, Debbie remains committed to raising awareness and helping to fundraise for liver research so others will not have to endure the terrible experiences she has.
“I have joined the CLF volunteer group here in Ottawa and have raised funds at every Ottawa Stroll for Liver since 2012,” says Debbie. “I’m continuing to share my story with many who are waiting on the transplant list and others who were diagnosed with NASH as well.”
Debbie - Liver Recipient
The Vanderzon Family
Adam was born August 21, 2008, in Ottawa, at the Queensway Carleton Hospital (QCH). He is the younger of our two boys. Within a few days of his birth, our very sharp pediatrician (Dr. James McConville) noted that Adam’s bilirubin levels were off but not in the typical way that is seen with neonatal jaundice. Further testing ensued and Adam was diagnosed with biliary atresia. A condition in which one or more bile ducts are non-functional or absent, biliary atresia is a progressive disease in which bile backs up and leads to more and more damage to the liver leading eventually to liver failure.
We were referred to Dr. Carolina Jimenez, a member of the amazing GI/liver team at CHEO and we learned that to manage this condition, surgery of one form or another is required. At 6 weeks of age Adam underwent the Kasai procedure, a surgical attempt to find an alternative way for the bile to leave his liver by using part of his small intestine. The surgical team at CHEO was incredible, the procedure looked positive at first but as the statistics show, the Kasai procedure just wasn’t enough.
However, at that time, our little guy was pretty stable and a relatively happy baby but we knew his condition was progressing. Unfortunately, at 4 months, we were told by the medical team, “Adam is in liver failure and Adam will need a liver transplant…” and, “…since both of you have a blood type compatible with Adam, either one of you can be considered as a live liver donor.” We determined that, as a 6 month old, Adam would do best with his mom by his bedside and so I, Adam’s dad, went through a battery of tests to ensure he was otherwise suitable to be a live liver donor. He was found to be a suitable match. In came the amazing teams at Toronto General Hospital for dad and The Hospital for Sick Kids for Adam.
The liver transplant ended up taking place on Feb. 12, 2009 when Adam was 6 months of age. After hours of surgery, both patients recovered smoothly. Adam’s jaundice started to disappear the next day and he became a bright smiling charmer at Sick Kids. He did so well that he was discharged two weeks post transplant.
The first year was a bit rough, including many medications, challenges on his bloodwork and many trips to Sick Kids and CHEO. However, eventually all but one daily immunosuppressive medication was required and Adam was thriving.
The second part of our story began in 2013, when Vicky Ng, an amazing doctor and researcher at Sick Kids approached us with the idea of recruiting Adam into a study called the iWith study (Immunosuppression Withdrawal for Stable Pediatric Liver Transplant Recipients). The purpose of this study was to determine if it is safe to slowly reduce and stop the immunosuppressive drugs in some children who have had liver transplants. After numerous tests, including a liver biopsy, Adam was accepted into the study. The study began with a slow reduction in the dose of Adam’s medication along with Adam having bloodwork every two weeks to monitor for signs of rejection. After a year of slowly decreasing his immunosuppressive medication he was completely off of it. Follow-up biopsies were performed to ensure his liver remained healthy and showed no sign of rejection. Adam is now a liver transplant recipient free from all medication. This is incredibly rare and an amazing example of future possibilities in liver and transplant medicine.
Heather - Mom & Caregiver
Catherine & Don
Living Donor & Kidney Recipient
My husband was diagnosed with Polycystic Kidney Disease in his early fifties - maybe it was 2005. This was a total surprise to us - we had no idea what it was and what the results of the disease would be. In fact we were shocked when Dr Magner told us that his kidneys would fail and he would need to go on dialysis and if lucky he would receive a new kidney via transplant. To back up a bit my husband did have annual physicals and may in fact been told that he had Polycystic Kidney disease but not what the disease was. We only realized the total effect of the disease once we went to Ottawa nephrology at the Riverside campus. We watched as his creatin levels continued to rise - even though he was very vigilant about doing all the things he was to do, eating the right foods, taking whatever medications that were required of him and continuing to consult with various professionals at The Renfrew Victoria Hospital nephrology department. I attended all of his medical appointments with him and kept a detailed record of all that was happening. Of course, this was not enough, and his kidney function continued to decrease. Consequently, he started dialysis early in 2008. We went to Renfrew Monday, Wednesday and Friday every week. We both worked full time and had to leave work at 4 o'clock to get home, change and head to Renfrew to arrive for 5 o'clock. It took us exactly 40 minutes to drive from our home in Pembroke to the Renfrew Victoria hospital. Even our dog came with us. For the 5 hours that my husband was on dialysis I eat my supper walked the dog did some of my office work and of course spent a lot of time with my husband. I had to drive home after dialysis - this was very difficult for my husband as he did not particularly enjoy my driving - apparently I hit the same hole on the road every time - which I must admit I did not even realize the hole was there, he could not drive after dialysis. While this process was ongoing I and one of Don's siblings (he was one of 6 children) started the screening process to see if we could be potential kidney donors. Both his sister and I matched equally as potential donors. We decided that I would donate my kidney for a number of reasons - I had sick leave and my sister-in-law is self employed and she also lives in Kanata and volunteered to look after him post transplant. I continued with the battery of tests that were required to ensure that I meet all the transplant requirements. Our day finally arrived on October 30, 2008. All went well and we were both back home by Christmas time. For the next 8+ years my husband continued to be a model patient - he took his medications on time. continued to watch his diet, attended all his medical appointments and followed the instructions of his doctors. He had 8+ more excellent years - he worked full time until he retired at age 60 in 2012, he continued to play slo-pitch ball every summer, he was at CHEO with our three daughters when we found out that none of them carried the Polycystic Kidney gene, he was able to participate in the weddings of two of his daughters and also had learned of the upcoming birth of his first grandchild. He was also very involved in fund raising for The Kidney Foundation of Canada as part of The Sutherland team - we all participated in the annual Pembroke Kidney Walk which our family has organized for the past few years and we also run a very successful slo-pitch tournament in Pembroke in July to raise funds for the Kidney Foundation of Canada. In 2017 the tournament was renamed The Don Sutherland Memorial Ball Tournament. WE learned so much from his journey with Polycystic Kidney Disease, transplants and The Kidney Foundation. I miss so much - just him being here beside me as I watch TV in the evening, going to one of his many ball games, our travels together, my phone alarm going off every night at 9:00 pm to remind him to take his pills, walks through our back yard, cutting wood all that involves in being part of a marriage. However, if it was not for transplant we would have missed so much more - I am grateful that I was a viable donor for him - it enriched our lives so much. Unfortunately, I found my husband passed away on the bathroom floor in the early morning of December 14, 2016. An autopsy revealed that he had died of a saddle pulmonary embolism. Comforting that he did not suffer. His first grand child was born on January 3, 2017. We would have been married 43 years on May 11, 2017.
I know that this is a long story...tears stream down my face as I write it...I have not put into words all that we had done together during our kidney journey since his death. Thank you for reading.
I am so grateful for our 8+ extra years that transplant gave us.
Catherine - Living Kidney Donor & Caregiver
Blair & Brenda
Double-Lung Recipient & Caregiver
In December 2015, not long after Christmas, my husband Blair was diagnosed with pulmonary fibrosis (lung scarring) due to a rare condition called hypersensitivity pneumonitis. Blair is a visual artist and the theory was that prolonged exposure to his paints triggered a strong response from his immune system, creating inflammation in the spaces between the lung’s airways, air sacs and capillaries, and making it hard for his lungs to function.
We learned his condition could not be treated with medication and he did not have long to live. In May 2016 we had a telehealth conference with the medical director of the University Health Network (UHN) lung transplant program, Dr. Lianne Singer. She gave us an overview of the lung transplant process, the assessment process, what the possible outcomes could be, and other considerations, like potentially having to relocate to Toronto. After this meeting we began to feel some hope.
Unfortunately Blair’s condition deteriorated rapidly. In mid June he told me he had to go to the hospital. I wanted to drive there immediately, but he insisted on having a cup of coffee first. If I had known how long it would be before he could again enjoy a coffee in our own house, I might have brewed another pot.
After admission he developed severe oxygen deficiency and was rushed to the ICU. I thought then his chance of getting a lung transplant had passed, but in fact they were already conducting assessment tests. In July, when his oxygen requirement lowered enough to be transported, he was flown to Toronto to finish the assessment and then told he could return home – but we decided it was safer to stay in Toronto, living with his sister, in case he got too sick to be transported. The UHN respirologist assigned to Blair promised to get him in the best shape possible for transplant, and he kept that promise.
Blair was accepted on the transplant list in September, and got a call about a possible transplant in December. This was the first of nine “false calls” he received between listing and transplant. False calls were difficult, but the times in between were harder still. Our new “normal” routine was physio three times a week at Toronto General and many medical appointments. Blair had two concurrent exhibitions in Ottawa in January, which we could not attend. Finally in May came the final call. Blair had a double lung transplant, but it was a very complex surgery. He became very ill afterwards, spending several weeks in the ICU before finally moving to the transplant unit, and then to Bridgepoint hospital for six weeks of rehab. We were finally able to return home to Ottawa in October 2017.
Blair continues to face a number of health challenges – the surgery is incredibly difficult on bodies, immunosuppressive drugs cause many issues, and transplants are not cures – but we are determined to enjoy this bonus time to the fullest. We are incredibly grateful to the anonymous donor and the family for their generous gift of life, and to the amazing and skilled transplant team at UHN.
Brenda - Wife & Caregiver
One day way back in February 1988, I could hardly walk home from school and after a visit to the family doctor, and some blood work, results indicated a problem with my liver. I was then referred to a gastro-enterologist and two months later, I underwent a multitude of tests such as liver biopsies. It was confirmed that I was suffering from auto-immune hepatitis and that a liver transplant was already being considered. For those of you who don’t know, auto-immune hepatitis is when your body’s own immune system is overactive, and therefore decides to attack, in this case, your liver cells. I was sent to Toronto to meet with a hepatologist and after more blood tests, he confirmed that with medication alone, I should have a normal life like everyone else.
Over the years, I was told that, eventually, the liver would fail completely. It was now necessary for me to go on a liver transplant list. In July 2009, I began numerous tests and attended countless meetings at the St.-Luc Hospital in Montreal. Then, in September, I received a call confirming that, within the O blood type group, I was placed ninth on the transplant list out of 72 patients! As advised, I started getting ready for that very important day. I packed a light travel bag and prepared a detailed list to cover every possible issue. With the help of the Canadian Liver Foundation, I was lucky enough to be able to contact some liver transplant recipients and have them share with me their personal stories and experiences. I constantly researched the internet determined to prepare myself in every way that I could. Every Friday, I would also call the St.-Luc hospital for an update on my status on the waiting list. On January 24, 2010, I received the phone call. They may have found a liver for me. About an hour later came the second call—it was a false alarm, as the liver was declared unfit. A month later, on February 20, I received the call that my new liver was ready, on ice, and that surgery in Montreal would begin around 5:00 p.m. This time, everything went as planned. The surgery was a great success and the road to recovery went as predicted. I recovered so well that I was declared their healthiest patient ever, after only 33 days of surgery. Many thanks go out to my surgeon and the transplant team, but I especially thank my anonymous donor and the donor family for their gift of organ donation. I feel great now; my energy is back. My eyes and skin are no longer yellow from the jaundice and there is no more swelling throughout my body. In June 2010, I received a gift certificate to the Running Room. I told myself, It’s time to exercise and get out. I visited my local Running Room store in Orleans and joined the walking group until December. Afterwards, I joined the learn-to-run training program in January 2011 and ran the 5K St. Patrick’s Day run in March. Having so much fun, I continued with the 5K running program and, by myself, trained for the 10K race for the Ottawa Race Weekend in May. What a race! I completed it in less than 61 minutes. After a few more training programs as group leader, I became the instructor for the learnto-run program as of October 2011 and I love getting out and helping others. On my own time, I continue to train for other 10K races. I also do cross-training every day. In July 2012, I will attend the Canadian Transplant Games in Calgary. I’m also a volunteer for the Canadian Liver Foundation with fundraising and helping out with their major events. I also started visiting some future liver transplant recipients to provide them with some guidance, comfort and confidence. For those of you who are not aware, there are over 100 different kinds of liver diseases but only one is due to alcohol abuse. The liver is a very tough organ, and it doesn’t complain. You could have no apparent symptoms and your liver could be well over 50% destroyed. Each year, over 90 people in Canada died while waiting on the liver transplant list, so please ask your self: have I ever considered donating an organ?
Robert - Liver Recipient
Nadia & Her Mom
Living Donor & Liver Recipient
As far as I can remember, my family always freely discussed organ donation when the subject arose (usually from a news story). We were all voiced our position in support of organ donation. Never did we ever truly think how important organ donation would be years later. In the winter and spring of 2014 my mother started getting quite ill. In April of that year we heard the diagnosis of liver cirrhosis from NASH (Nonalcoholic steatohepatitis). By June we discovered she was in end stage liver failure and the only recourse to save her was a liver transplant. Immediately I knew my course of action was to be tested as a potential live liver donor for my mother. While at the time I was unaware of the stats for transplant rates for livers from deceased donor, I did know that my mother would get tremendously sick before being high enough on the transplant list to receive a liver from a deceased donor.
Watching someone you love slowly get eaten away by any disease is quite simply heart wrenching. In my mother’s case end-stage liver disease manifested itself primarily in the form of ascites (swelling of the abdomen, it shocked me just how much fluid an abdomen can hold), jaundice, bruising and itching and most maliciously Hepatic encephalopathy. As the liver is scarred, it becomes unable to remove the toxins from the body resulting in deteriorating brain functions. My mother essentially became a stranger, from an absolute curmudgeon to a helpless toddler unable to remember the most basic tasks. Luckily these episodes were short in duration but were most difficult to experience with her.
By the fall of 2015 my mother was officially placed on the transplant list and I began my assessment to be a living donor. Making the decision to be a live donor is not one to take lightly. You are essentially putting your life on hold for several months and are quite literally putting your live on the line. My mother initially resisted the idea of having her child go through this for her but accepted my wish to do proceed with the testing. In an ideal world, living donors would not be needed. In an ideal world, there would be enough organs from diseased donors for everyone who needs an organ. Sadly that is not the case and too few organs are available hence the need for living donors. Nevertheless, being given the chance to be a living donor is not something I take lightly. There is something immensely satisfying in being able to do something rather than standing powerlessly on the sidelines as you watch a love one slowly die, as is heartbreakingly the case with so many other diseases.
After several months of testing, horrible dieting (I, too had a fatty liver that I needed to rectify in order to donate to my mother), I received the news that I would be able to donate to my mother. There are not enough words to convey what it felt like to be a donor. Grateful is one that comes to mind. Gift is another, because yes, I felt like it was a gift for me to be able to do this. Every birthday, Christmas, Mother’s Day, and every day in between are gifts and blessings that my mother is still here. She was given a second chance and I am immensely grateful that I was able to do this for her. I am thankful for every extra day, month, year that she is here is with us because were it not for organ donation I would not have this story to share.
Nadia - Living Liver Donor
Jim & Marah
Heart Recipient & Caregiver
Subject: My reason why
A good and strong heart now beats in my husbands chest .
A heart that was well loved and cherished . The proof of this ,when the look of wonder
and awe appears on my husbands face as he places his hand over this heart just to feel the beats .
Our journey to this moment began over 16 years ago due to my husband contracting pneumonia , with an infant and three year old at home , to continue working was the only option . Severe damage was done by the virus attacking the muscles around the heart .
With the passing of time there were plenty of “normal” years but our children found their father lifeless on the ground or floor too numerous times to mention .
These moments are imprinted on our hearts forever . The last 6 years being the worst of it .
A heart injection fraction of 6% , blue lips , lungs filling up with fluid and still he tried to work to save us losing our house and keep the creditors at bay .
He’s quite the fella you helped save .
An implantable defibrillator, flat lining more times than could be kept track of and then an LVAD.
No more beating heart.
As I put my ear to my husbands chest only the barely audible whooshing of a machine and eerie blue light reflecting on the ceiling show he’s alive . He’d defied all the odds and yet ( ?)
Over 2 years on the transplant list , often days seemed like a nightmare taking my breath.
A bad dream that when you waken you try to rewrite the outcome of the story but to no avail . I’d often been told to prepare for the worst and yet still I believed . The only way we’ve managed is with the outpouring of love , prayers and support from our Family , Friends and community . All of this a tribute to the man my husband is .
This is now OUR story .
Seemingly in the blink of an eye my family awakens . Our eyes , arms and hearts wide open . What brought us to life again was the sound of a beating heart !
As I lay my head to my husbands chest now I hear this beating , one for his life and one to honor a soul in passing .
That you chose to donate , to pass on the greatest gift , your love of life is inspiring .
I feel a deep trembling inside , such joy but equaled with such sorrow at your loss .
Over the years no matter how daunting the news I’ve held back my tears . Now I know I was waiting to shed them for you .
There are many languages and ways to say THANK YOU but all of them seem so inadequate . We truly do not have the words for the depth of our feelings .
My only way of expressing our thanks is by sharing this outpouring of Love we’ve experienced along our journey . In times of sorrow , our Family , Friends and those
we hold dear hope you can look upon these photos and know how surrounded you are by our love and gratitude . Your loved one in his passing will not be forgotten . My promise to you and those you hold dear.
He is now loved , honored and will be cherished .
All of this in tribute to a heart that beats on .
In loving memory 30th April 2015 New Life 01 May 2015
Marah - Wife & Caregiver
The Bhatal Family
Liver Recipient, Living Donor & Caregiver
On November 8th, 2010 Lillian was born after a healthy planned C-section with no surprises but on December 6th at just six weeks old things rapidly changed and Lillian was diagnosed with biliary atresia.
On New Year’s Eve, doctors recommended the Kasaia procedure for Lillian, an operation to replace the damaged bile duct with a new drainage system made from a piece of the small intestine. It worked for awhile, but the 14 medications Lillian was taking daily were not helping and the doctors recommended a liver transplant from a living donor.
Lillian’s father’s was a match for her, but he had to embark on a 9 month routine to become healthier and lose weight to be able to donate part of his liver to his beloved daughter. During this 9-month period, Lillian was in horrible discomfort and as time went on, her spleen enlarged. Her health was up and down causing such distress for Lilian and her family.
Lillian was 14 months old when she received a portion of her Dad’s liver. Unfortunately In the past 3 years Lillian has had 5 liver biopsies because she continues to experience bile duct problems. She may require another transplant in the near future. Lillian’s parents Arlene and Tony trust that the research the CLF funds could soon find the answers to avoid another transplant for their daughter.
The Bhatal Family
Joyce & Her Mom
Living Donor & Kidney Recipient
In 1998 my mother was diagnosed with Polycystic Kidney disease. A condition that affected both her kidneys, had no cure and would progressively end up in complete kidney failure without a new kidney. Up to this point my mother had been living life to the fullest - healthy and active. Fast-forward to 2002, my mother's health and quality of life had deteriorated quite significantly. Her kidneys were barely working and had already been placed on a wait list for a kidney transplant. By this time, she had also started dialysis. This was a very difficult time for her and our family as we juggled our schedules to become my mother's caretakers and companions to all her many medical appointments. Couple of years later with mom's health declining fast our doctor talked to the family about living donation. We were very excited to find out after a series of testing that I was a match! On January 11, 2006 I donated a kidney to my mother. The surgery went well, a couple of ups and downs during recovery but overall, everything went as good as it could have. My mother's health improved as a result. She was able to discontinue dialysis and do what she had enjoyed doing again - travelling. Not having to be on dialysis was freedom to her. It's been 13 years since the transplant. Aside from other health issues, my mom has been doing relatively well. As for me, I live a normal life and has not had any issues post-donation. I would certainly do it all over again. I've been going to the Riverside Hospital every spring for the past 12 years for follow-up and have each time been told that everything is good and normal with my own kidney function. By sharing my story, I hope more people would consider donating or signing their donor cards. I also signed mine so one day when I pass on, I can also give the gift of life to others who might need a second chance. I have since had my own family with two healthy kids post-donation, becoming pregnant with my first born 8 months after donating :)
Joyce - Living Kidney Donor