Susan Cosenzo

Hello. I’m Susan. I’m an active 65-year-old who lives 30 minutes west of Ottawa in Carleton Place.

My world stopped in 2001 at the young age of 41 years when I went into right heart failure, almost dying with one of the rarest forms of this rare disease of Pulmonary Hypertension. Very sadly, I only had access to one oral and one IV drug treatment therapy. My symptoms remained very severe even with treatment.

For 13 years, I lived an hour from Toronto since there was no specialist in my hometown of Ottawa to treat my disease. I lived isolated from family & support, as a single Mom, too sick with severe symptoms, to care for myself properly, and my two young children. I instead relied on a broken system of community health & social services, barely surviving on a limited disability income.

I lost everything!! I lost my health, a complete sense of myself, physical abilities, my children lost a true mother, a robust marketing career was gone, and the opportunity for a good income to support my small family. I was totally helpless due to the lack of new drug treatments that could improve my disease and lifestyle.

I must add that I feel my disease and the lack of new drug treatments undoubtedly contributed to my inability to care for and parent my children properly. This ended with both my children having severe youth drug addictions, resulting in the accidental overdose death of my son, aged 23, 11 years ago. How do kids live, wondering if Mom is going to live or die? And watching her so sick.

I am here today, now stable with normal pressures, 20+ years later. I’m happy to answer questions about my journey from being on the transplant list to regaining good health with medications and a healthy lifestyle.