“I don’t know anything about [my organ donor], but they are MY HERO.”
“I would like to start off by saying that I am here today because of one person and I have no idea who they are! I don’t know what age they were, or whether they were a man or woman. I don’t know if they were a sports fan or if they had a passion for music or movies, or even if they preferred coffee over tea. I don’t know anything about this person, but they are MY HERO. Because some time ago, this person decided they wanted to be an organ donor. But that’s not where my story begins….
“My PH journey began in 2003, when my husband Joel and I moved to Toronto, Ontario for college. Because we were starving students, walking was our ultimate mode of transportation. But when I noticed that my 15-minute walk to school was becoming increasingly difficult, I started to question whether there was something wrong with me. After all, shouldn’t the walk be getting easier? This was when I decided to call my doctor. I had no idea at that time where this simple phone call would one day lead me.
“After several months had passed, one misdiagnosis of asthma, more tests than you can possibly imagine, a few emergency visits, more than my share of doctor appointments, and one cancer scare, I was finally diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH).
“CTEPH is a lung disease caused by old blood clots in the lungs and its remaining scar tissue which ultimately blocks the arteries of the lungs and restricts blood flow. This puts the heart under a lot of strain and forces the heart to work a lot harder than what it was designed to do. In the end, this disease can make you feel extremely short of breath doing the smallest tasks. It can make you feel faint, weak, lightheaded and dizzy, and as your heart is stressed to its max, it will cause your heart to beat at a marathon runner’s pace even while at rest. So imagine sitting on your couch watching Netflix, and the entire time your heart is beating like it wants to jump out of your chest. This is what CTEPH feels like.
“Although I was shocked to discover that my body had failed me in this way, with treatment, an incredible set doctors and a truly amazing support system, I was able to live a pretty normal life for over 11 years. And if you have heard of CTEPH, you would know that this is quite the achievement.
“Throughout those years, I was also evaluated twice for a pulmonary thromboendarterectomy , a surgery designed to remove the blood clots and relieve the pressures in the lungs. Unfortunately, I never did qualify for this as my blood clots were too small and too far to reach. And as CTEPH is a progressive disease, by June 2014 my condition had worsened, and I was told that my only chance for survival was a double lung transplant.
“Being told that you need a double lung transplant in order to continue living is unlike any feeling I have ever experienced before. I felt completely helpless. No amount of exercise or healthy eating could fix this. And although this news was difficult to swallow, I have always considered myself to be fighter and I most definitely was not about to start giving up now.
“I was officially put on the list on June 22, 2015.
“By November, my CTEPH had worsened to a point that it was no longer safe for me to be out of the hospital. Walking was becoming near to impossible, showering was not happening as often as it should and even just sitting in bed doing absolutely nothing was a struggle. By this time, I most definitely was using a wheelchair to get to around, I couldn’t tie my own shoes or get dressed on my own, and sleeping was becoming my favourite past time. I felt short of breath pretty much all of the time, I was beyond uncomfortable.
“As I had suspected, my doctors decided to admit me to the hospital. In fact, they felt it was time to move forward with what they called “Plan B”; ECMO/NovoLung, a heart-lung machine that needed to be connected directly to my heart. To my surprise, this meant open-heart surgery. This machine gave me an extra scar, but it also gave me so much more…a much-needed break for my heart and a chance to continue waiting for my new lungs. Lucky for me, that only took six days! And so, on December 2, 2015, I received the gift of two beautiful, healthy lungs.
“I am now just over three years post-transplant and I feel fantastic! The things that I am now able to do, still amaze me. I no longer fear stairs or walking up hills. I have been dancing, swimming, golfing, biking, hiking, ziplining and even manage to go to the gym every now and then. I have travelled to Mexico where I climbed a Mayan ruin, walked around the CN Tower (an observation tower in Toronto) and have even spent an entire day riding rollercoasters at an amusement park. I feel so grateful every time I can tie my own shoes, or play with my nieces and nephews, and I most definitely feel lucky to finally not have to use a wheelchair or a handicap pass for that matter.
“It still boggles my mind that they actually removed my lungs and replaced them with someone else’s! I am literally alive and breathing because a kind and unselfish person decided to become an organ donor.”