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Volunteer Advocate
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Pearl’s Story

My name is Pearl Cooley, I am 21 years old and I have Cystic Fibrosis. As some of you may know, Cystic Fibrosis is a genetic chronic illness that affects the respiratory and digestive system. I was diagnosed when I was 2 months old and have had 2 double lung transplants due to CF.

My health started to decline when I was 18 and away at Georgian College in Barrie studying marketing. I was a typical teenager who was more interested in a social life than taking care of my health. In February 2015, I made the decision to leave school and go home to focus on getting healthier. The night before I planned to head home, I felt a sharp pain in my back and couldn’t catch my breath. I walked down the hall of my residence knocking on doors but no one was answering. The last door I knocked on happened to be someone I know who was studying Pre- Health. They called my parents and 911, explaining the situation as I couldn’t speak for myself. 4AM the next day I was having a chest tube placed to help re-inflate my lung. My lungs were so congested with mucus that my lung was unable to fully expand right away. I was admitted and they started the treatment for a chest infection. I was getting sicker by the day. I could hardly eat and dropped down to below 90 pounds. We urged the doctors to contact the CF centre in Toronto at St. Michael’s Hospital, but they insisted they had things under control. The carbon dioxide levels in my body were so high, I would of been in a coma if my kidneys weren’t so healthy. My lung healed but I was still very sick. I had a fever, the chest infection wasn’t clearing up, I was on a bi-pap machine at night to help remove the carbon dioxide from my body and make it easier for me to breathe. Again, my lung collapsed. The ICU doctor came in right away that morning and inserted another chest tube and contacted St. Michael’s. He had realized this was a serious situation that they just didn’t have the means to handle.

When arriving at St. Michael’s ICU, it looks like the basement of the hospital. Beds are separated by curtains and there are only 2 isolation rooms; I was in one and an inmate was in the other. The doctors did a full work up on me when I arrived, making sure I was comfortable after being choppered in by ORNGE. The next day, my family met with the CF team that works alongside Toronto General Hospital for transplants. I was told that the only way they would assess fixing my lung, was if I would agree to a transplant if all else failed. I was transferred over to TGH to begin being assessed for ways to fix my collapsed lung, as well as for a double lung transplant. Days later, we found out there was nothing they could do for me, my lungs were too diseased. On March 8th, 2015, I was listed for my first double lung transplant, and just 16 days later, I was being wheeled into surgery. Recovering from such a major surgery was not easy, physically or mentally. I had some complications after, such as rejection, infection, and fluid around my heart that caused me to go into cardiac arrest for 2 minutes on Easter Sunday. Again, I was rushed into surgery where they drained the fluid from around my heart and placed a chest tube to drain any other fluid that may build up. Now it was time to start my physical rehab. This meant getting out of bed with a feeding tube, a breathing tube, 2 central lines, 5 chest tubes, 2 IVs, and an arterial line. This was not easy to navigate around the ICU, so the team brought a treadmill into my room. All I had to do was stand up, and walk. Easy, right? No, not easy. Recovering from 2 major surgeries took a lot of energy out of me. But I had one specific motivation; a puppy. The longer I walked, the stronger I would get, the closer I would get to a puppy. On Mother’s Day weekend, I was discharged from the hospital and started to live the new normal. I still needed to remain in Toronto for the last 6 weeks of my physical rehab but I was no longer hooked up to machines and was able to do things on my own. Father’s Day weekend we moved back to Guelph, and just 2 days later we picked up Felix, a golden retriever-Australian Shepard mix.

Things went extremely well for me for almost 2 years. I worked multiple jobs and ended up starting my own personal training business. I went back to school for Pre-Health sciences, with hopes of continuing my education in the health and fitness industry.

Unfortunately, on February 27, 2017, I started to feel short of breath. The next morning, I could hardly walk up the stairs without being winded. We went to the Guelph General Hospital emergency room where I was diagnosed with a heart flutter. Most likely caused from a buildup of scar tissue in my heart from the trauma my body had been through just 2 years earlier. They tested my lung function which showed a dramatic decrease of 40% in just a few days. Later that week, I was discharged and went to clinic at TGH. They told me I was most likely in rejection and that we would start a course of high dose steroids to try and tackle it. Unfortunately, it didn’t work. I went through 2 other treatments to try and treat the rejection, but it just seemed to make me sicker. My lung function dropped to a measly 11%. I was re-listed for a second double lung transplant on April 11.

I tried to go home on oxygen and IV antibiotics but the doctors continued to worry with my rapid decline. I was hospitalized indefinitely. On June 3 at 4PM, a doctor came to speak with my family; they had a possible donor for me. We called my sister and brother in law so they could bring my nephew and see me before surgery. June 4 at 10AM I was wheeled back into surgery. This time, I didn’t have such harsh complications. I had trouble coming off the breathing machine but I forced myself to do what I needed to do to get stronger. I may have only been able to walk a few steps the first couple days, but it was what I needed to do to get my lungs working. This time, I only needed 4 weeks of recovery time in the hospital. I was discharged the first week of July. I still had 8 weeks of physical therapy but I was able to get lots of extra rehab outside of the hospital, such as walking down Bloor Street to Tiffany & Co.

I have since been able to move home. Living with CF and going through two double lung transplants have given me a different perspective on life. The type of person I am has definitely changed. From someone who was selfish and hated everything because of how sick I was, to someone who appreciates the little things in life and runs annual fundraisers for CF. I have become more of an advocate for those with CF and those that need transplants. I have to say, I was a little scared going into this second transplant. Just 1 year ago my friend passed away after having her second transplant, just a week after I had seen her. I have friends waiting for their first and second transplant. 50% of CF patients that have a double lung transplant will need a second transplant within the first 2 years. There are currently 76 people in the Trillium Gift of Life network waiting for a lung transplant. Signing the forms that come with your driver’s license and health card, could help save someone’s life one day. Make sure your family knows of your wishes, have the conversation with them about organ donation. If you are unsure if your organs can be donated to someone, they can always be donated for research. My organs cannot be transplanted, but I will be donating them to research which may lead to the cure of Cystic Fibrosis one day. Please donate to Cystic Fibrosis Canada today, get us $1 closer to a cure.

For Pearl, and everyone else with CF, be the reason for a cure: http://bit.ly/2ADWJym