Friday, 5 February 2016
PHighter Friday: Kris Ross
The road to diagnosis was incredibly long and frustrating. I was mostly symptom-free as a child. I would get blue lips when I was cold which was attributed to being so skinny. In my later teenage years, I started having breathing difficulties when I would do physical activity and when it was cold out. I was told I had a reactive airway and an intolerance to cold so I should use an inhaler before going to the gym and before going out in colder weather. My blood work indicated high hemoglobin so I was sent to a specialist who did some nuclear medicine tests. He diagnosed me with “couch potato polycythemia” --- basically, my hemoglobin was high because I was lazy and didn’t do very much physical activity.
Over the next decade, I signed up for gym memberships I couldn’t use, despite my best efforts, and tried different inhalers. I had high hemoglobin results on my blood work during this time period but I was assured I was fine and my doctor told me he wished all of his patients could be so healthy. Finally, after a couple of my colleagues told me I didn’t sound like I had asthma or a reactive airway during a basketball game, I started questioning things and decided to go to a walk-in clinic to explore things further.
In July 2002, I went to see a doctor at the clinic. We had never met before but he listened to my concerns and sent me for a chest x-ray and scheduled some cardio-pulmonary tests and an arterial blood gas. The x-ray was deemed normal but my lips and fingers turned a bluish-purple shade during the cardio-pulmonary tests and I had pain between my shoulder blades. My arterial blood gas was 44. I was sent back to the clinic immediately and, once I convinced him I had never been a smoker, the new doctor told me the only things that would give me these types of results were a major heart or a lung problem. I was scheduled to see a respirologist the next week. He determined my x-ray was not normal because my pulmonary artery was enlarged. He felt the most likely reason was an undiagnosed hole in my heart.
Within two weeks, I met with a cardiologist and had my first echocardiogram. It revealed a large ventricular septal defect (hole in the wall between the two pumping chambers of my heart). Over the following three weeks, I had a number of tests, culminating with a right-heart catheterization. It was determined I had pulmonary hypertension caused by the hole in my heart. It was left open for so long that my lungs were irreparably damaged. To say this was devastating isn’t enough to really capture how I felt. The future I had imagined for myself was gone and, in its place, I was left with fear, anger and uncertainty. The road to a diagnosis took a decade to travel and there was some thought that had I been diagnosed when I first began exhibiting symptoms the hole could have been repaired and the lung damage minimal. My body was my enemy.
There were very few specialists at the time so I was sent to Toronto for assessment. I was told, untreated or unresponsive to treatment, I might have a couple of years before I would need a heart-lung transplant, if donor organs were available. Thankfully, the medication worked well, stabilizing things, and I was able to return, mostly, to the life I’d known before. There were things I would never be able to do and there were things I had always wanted for myself that would never happen. I mourned them and had to move on, living life as fully as possible. My family and friends were great supporting me, adapting things so I could be included in their activities and events. Eventually, they opened a Pulmonary Hypertension Clinic in Ottawa at the Heart Institute, closer to my home, and I starting being treated by the fabulous team there.
I was stable and leading a relatively normal life for years until many bumpy months last year after a nearly fatal case of pneumonia. I had excellent care at the Heart Institute and from family and friends. With some medication changes, months off of work and a staggered return, I was able to get back to my pre-pneumonia state --- even better in some ways.
It’s 2016 and I continue to be relatively healthy with the support of family, friends and the team in Ottawa.