Jenn & Filomena

Jenn and FilomenaI 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 has 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 Bruno
@iamjennbruno
@ottawadonors

Jenn – Living Liver Donor

The Vanderzon Family

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. Canoe
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

Laura Bradley

Laura and SisThis 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

Lilian Bhathal & Family

Lilian and FamilyOn 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 Bhathal Family – Caregiver, Living Liver Donor & Liver Recipient

Catherine Sutherland

CatherineMy 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.Catherine and husband 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 – Caregiver, Wife and Living Kidney Donor

Debbie Kleiboer

DebbieOn 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.

Debbie and DavidDespite 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

Karen Colenbrander

Inhale Life – Exhale Thanks

KarenBreathing 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

Anne-Marie Koeslag

Anne-marieMy 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

Leslie Kaufman

LeslieNovember 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

Glynis and Jeanne

Glynis and JeanneMy 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.

Glynis – Kidney Recipient