I first started noticing symptoms approximately seven months after the birth of my second child in 1996. In April 1997, I was diagnosed with what they then called ‘stage 4’ (life-threatening) pulmonary hypertension (PH). In just over a year, I went from holding my newborn child and wondering about the future to being told that I may not survive the night, and my family called to say their goodbyes. Despite the expectations, I defied the odds and lived. First, it was just the night, much to everyone’s surprise. Then they put me in the ICU for a few days, sent me home “to die in comfort,” and made the proper arrangements.
A month passed, and I was still alive. The doctors then told me I had six months. It is almost impossible to describe the mix of fear, hope and overall sense of uncertainty this time imposed on myself and my family. How many times can one prepare to say goodbye? My husband and I decided to take our last family vacation, taking our 4-year-old daughter and one-year-old son to Disney World. As the 6-month mark drew closer, I started believing I might survive a little longer. I decided to find others going through a similar experience. When I couldn’t find any support groups for people living with PH, I decided to start one and started to take some control of my disease and my life.
I found a few other PH patients in my area, and the Toronto Support Group, one of the first of its kind in Canada, was born. We met at the Toronto General Hospital once a month to talk, supported by a social worker who was present at these early meetings. My sister made pamphlets to help promote ourselves, and our PH support group became a safe place to connect with other PH patients in the area. Some of us, including myself, focused part of our energy towards making a difference. For several years, we organized fundraising events to raise money for the Pulmonary Hypertension Society of Ontario and their research efforts toward finding a cure.
During this time, my PH continued to be relatively stable. After the first year, they estimated my time left at two years, then five years, and finally, they stopped altogether. Through it all, I have remained focused on making the most of each day for myself, my family and my community. In addition to my activities with the Toronto group, I involved myself with the US PH organization, attended different conferences and shared my experiences and insights with other patients when invited to speak at conference sessions. I am grateful for this gift of time, allowing me to watch my children grow, create positive change for others living with PH, and pursue my dreams of exploring the world.
If I had one piece of wisdom to impart, it would be to make the most of each moment and learn that while it might take determination and planning, dreams are still possible.
Carolyn Mathur, living with IPAH since 1997, Port Perry ON
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