I’m Aware That I’m Rare: Susan Cosenzo (425)
the phaware® interview
Canadian pulmonary hypertension patient, Susan Cosenzo discusses her PH diagnosis, the struggles of being a single mom living in government housing and how she overcame alcohol addiction.
Hi, I’m Susan Cosenzo. I am a PH patient diagnosed in 2001 with idiopathic pulmonary arterial hypertension. I live in Ottawa, Ontario, Canada. I lived for some time down near Toronto to be close to Toronto General as no treatment was in the Ottawa area when I was diagnosed.
I had some breathing issues, thought to be asthma for a few years before. I went on a trip to the Caribbean and went into right-heart failure unbeknownst to myself. When I returned, we did a heart echocardiogram. I was immediately introduced to the PH Clinic at Toronto General Hospital. I began treatment. They started me on Tracleer, fortunately, it was available in the early stages at that time. My pulmonary hypertension was very severe. I continued like that from 2001 into 2006 when I relocated to the outskirts of Toronto in Peterborough. I still sought treatment through Toronto General Hospital.
I had severe shortness of breath with very limited physical ability. Walking and showering was a challenge. I remember having to sit down in the shower just to get through it. Eventually, the medication did take effect. I started to receive some relief. I could do walking. Uphill walking was brutal. Through the years, I was a single mom living in government housing. My son, who started with me when he was 11 years old with my illness in Peterborough, was my main caregiver. I sought services through the medical community in Peterborough to have help come in on a regular basis for bathing. Then, I was put on oxygen for a while. My son would, bless his heart, go on the bus with a little cart and get the groceries for me. He had to do most of the house cleaning. It was a very difficult time. I salute him.
Unfortunately, in 2014 when I was starting to get better, when I was moved to Adcirca and Volibris (ambrisentan) treatments, my son died of an accidental drug overdose. So, I lost that companionship and that family support. I decided to relocate back to Ottawa. I investigated medical services and Dr. Shandy was at the Ottawa Heart Institute, took me on. From about 2006 until 2016, I made major lifestyle changes. I started to lose weight. I started sleeping properly. I took classes to understand the quality of sleep and how to achieve that. Eating regular three healthy meals a day. I ended up losing about 95 pounds. It took me about four years. I quit smoking. I was also for a short term period, an alcoholic. I am a recovered alcoholic now. I quit drinking. Then a few years later into about 2016, I had a right-heart catheterization and my pressures were normal.
I have been able to continue with normal pressures and lead an active life of golfing. I’m starting to play pickleball, walking, I’m back to work. I was off work all those years, and really enjoying life. I just purchased my mom’s home on Mississippi Lake. I enjoy staying there with my dog, Sally, and have a very full and happy life. But I am very particular about making sure my health is in check and I am living and sleeping properly.
I also was dealing with two children, which was my son at the age of about 17 with drug and alcohol addiction. Scotty, unfortunately, in the neighborhood we lived in, found comfort with that class of friendship. He became a drug addict and alcoholic. My older son, five years his senior, also a very severe drug addict and alcoholic. Fortunately, before his brother died, he got clean through a rehab program. He’s now clean for 11 years, thankfully.
I was not sleeping properly, I was sleeping on the couch. I would stay up until the wee hours in the morning and then sleep late in the morning. I was just leading a very unhealthy life. I started baby steps to get healthy. First, I started walking up and down the driveway, which was recommended by the doctor, till I could go further without having shortness of breath, as I started to drop my weight and live healthier. I know the medication obviously is helping to keep my pulmonary hypertension at bay, but I think there’s a lot of things that us as people can do. I depended greatly on services. I was a staunch Al-Anon member, an AA member. I sought out help through addiction services, through the hospital, through our community medical with the government. Anything that was available to help me. Without that, it wouldn’t be possible for me. I was close to lung transplant, however, I was disqualified because I could not quit smoking. That’s how severe the pulmonary hypertension became in around 2005. Yeah, that’s my journey through those years.
I’ve continued to be a single mom and I continue to try and set healthy boundaries with my son. I’ve come to grips with my son’s passing. It was an accidental overdose, he didn’t cause it. He never ever said that I was responsible for his drug addiction, because of what he had been living through. He said, “I take full responsibility for it.” That was very reassuring and made me feel good when I lost him. I was fine for three years and then had a complete breakdown. I eventually got through that and I understood that he left me guilt free. His addiction, he had been to rehab several times, so it was very severe. So his illness has taken him.
I also have a very strong Christian belief. I sought through prayer and meditation to help through that period. I have continued to help families that have children with severe drug addictions. There has been some success stories, which has been making me feel good after what I went through with my son.
Taking the baby steps in my depression, I use medication. A lot of different medications were prescribed to me. I had a psychiatrist as well as counselor. I worked through issues that I had and got past them. I found typing. I type my anger and whatever into a computer, pages and pages of it. My counselor one day asked me to print it, so I printed it and gave it to her. She never looked at it, but once those papers were gone, it just seemed that everything lifted. I had gotten through the reasons why I was struggling with my depression. That’s when I had a change of mindset to do whatever I could in my power to get healthy, to help the medications for pulmonary hypertension work in my body.
There was a lot of support. CMHA, which is the Canadian Mental Health Association, I was able to get a worker through them. I had left in a bad way from my partner. I was left with accumulation of household stuff, clothing. This young woman would come each week or twice a week and we’d go through and spend an hour and she would pack bags and just take it out that day to donation. I finally whittled down all my belongings to just a few, which was another aspect of my life that improved my health and my outlook on lifestyle. So there was a lot I did, I guess, now that I say it.
I can’t put enough on fighting your fight for services and help from the outside, especially because I didn’t have a caregiver. In those times, I had broken bones. I broke both my ankles one time and ended up in the hospital for three months. I had another break, which I was in a cast for quite some time. My bones were brittle. We struggled through all of it, my son and I. My older son would come to visit, but he did return to live with me, but unfortunately, his addiction was too severe, I couldn’t allow him to stay with me. I hope that perhaps some aspects in my journey might resonate with you or also there might be some of my milestones I made that might encourage you if you are struggling.
My name is Susan Cosenzo and I’m aware that I am rare.
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