My name is Joan-Marie Schoen. I live in the wonderful city of Calgary. I want to help find a cure for pulmonary fibrosis. This is my story and I tell it in loving memory of my father, William (Bill) Jamieson. 1954-2011
When I think back on my childhood, I can’t help but smile. I was lucky enough to have two wonderful parents who devoted so much time and energy into our family of six. Having four children is no small task but my parents, thinking back, made it look easy even though now, with two small children of my own, I certainly know it is not ALWAYS easy.
I remember from a very early age, going on outings with my dad and other siblings. We looked forward to our adventures with him and always had such a great time. From taking us swimming, or to the beach to tobogganing or skating, sometimes things as silly as dance parties in the living room, he always made time to spend with us. As we grew older, our dance parties turned into soccer tournaments, hockey games, ballet recitals and endless driving. My dad was there through it all. He never missed a game, recital or school concert. I remember him picking me up from my dance lessons late in the night, sometimes even wearing his slippers. He was truly involved with every one of his children.
In 2003, my father was diagnosed with Idiopathic Pulmonary Fibrosis. It was a complete shock to us all and what was worse, was most of us had no idea what it was. My mom, who was then a practicing RN, knew of the disease and did her best to explain but it still didn’t make any sense. How could someone who was so healthy and active his whole life, who didn’t smoke, develop a lung disease?
As I did my own research, I learned that sometimes Pulmonary Fibrosis could be caused by many different factors including other medical conditions, long-term exposure to certain toxins, and even some medications. In so many cases, doctors cannot pinpoint what’s causing the condition, and so it’s deemed as Idiopathic.
After my dad was diagnosed, things started to deteriorate quickly. He was put on a transplant list. Soon both of my parents were packing up their lives and moving to Toronto where he would receive his transplant. I was living in Alberta at the time, but moved home to take care of my younger siblings who were still living home and at the time attending school. From there, it was lots of fundraising to help with the substantial cost of living out of province to receive care. We were so lucky and grateful for the many people who helped along the way. Countless people stepped up to the plate to help our family. It was truly such a touching and humbling experience. To see so many people come together to help my dad showed me just how many people’s lives he touched.
On October 31st, 2007 we got the call.
I will never forget the tone of my mother’s voice on the opposite end of the phone. She was so calm and collected when she announced my dad was to receive a single lung transplant. I on the other hand was not. I remember falling down to the ground. A total mix of emotions flooding my mind. Thrilled the time had finally arrived, terrified of the what ifs, the worry, the excitement, constant back and forth. After waiting and waiting for what seemed like weeks, we were notified that the transplant was a success and my dad was recovering in hospital.
After months of recovery time and therapy, dad was ready to leave the hospital. To see my dad walk again without having to stop every few seconds to catch his breath is something I cannot put into words. He was now free to live his life again and spend that quality time with all of us I know he was so looking forward to. Not long after my father got out of the hospital, he found out he had developed a fungal infection in his transplanted lung and had to be put back on the transplant list. We knew we had to be strong for him for his battle ahead and he was determined and ready to do it all over again.
In 2010, I married the love of my life in Calgary and my entire family was in attendance. My dad was given a second chance, and was able to walk me down the aisle. A daughter’s dream come true. It was such a happy day and I am so lucky that my dad was able to be by my side.
Dad soon passed away in hospital in 2011 awaiting his second transplant with his family by his side.
My business partner, Cassandra Uhlenberg and I started a fitness fundraiser for all ages in support of Pulmonary Fibrosis. We hold this fundraiser at our studio, Kor Danceworks, based out of Calgary, Alberta every year right before Father’s Day in memory of my dad and to raise money and awareness for PF. I hope that the fundraiser will help educate people and bring more awareness to this awful disease. The funds that are so generously donated are given to the
Pulmonary Fibrosis Supporters of Calgary who are a small group of individuals trying to provide education, awareness, funding for research and support families that may be in the exact situation my family was in so many years ago.
I think my dad would be happy to know we are trying our best to help any little way we can. There has been so much progress made since my father’s transplant and the future looks much brighter. I sincerely hope that one day, Pulmonary Fibrosis can be cured.