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Hi, my name is Suzanne Martin Wagnell, and I’ve just turned 60 years old in January. My husband and I are both retired and living our dream in our lake house in Northeastern Ontario. During the summer, we spend our time on the lake fishing and enjoying the scenery and wildlife. Our family includes two very spoiled cats named Callie and Rascal.
As I hit my teenage years, I started noticing that I was short of breath and couldn’t keep up with my friends, whether it was just walking or sports. On one occasion, after playing in a curling tournament, I came home and passed out.
When I regained consciousness, I noticed that my fingernails were purple. It was at this time that I finally decided to seek medical attention, and in 1983, at the age of 19, I went to see my family doctor.
It turns out that I was born with a congenital heart defect. I underwent an echo and a right heart cath and was told that I had a “hole in my heart.”  The medical name for it was Patent Ductus Arteriosus. At that time, there was no mention of Pulmonary Hypertension.
The following year, I was referred to the Ottawa Heart Institute for further testing. After another right heart cath, they said that they could not repair the hole in my heart as the lung pressures were too high. Over time, I developed Eisenmenger’s Syndrome and Pulmonary Arterial Hypertension. The only course of treatment was a heart and double lung transplant if one was ever needed. I was told to go home and take it easy. Unfortunately, taking it easy is not who I am. Lol!
Instead, I went to university, got my degree and spent the next 25 years working for the Federal Government in various positions. I met my husband in 1996, and we were married in Negril, Jamaica, in 2000. We decided to get in as much travel as possible before my condition worsened. We spent the next 20 years visiting various Caribbean islands, doing a bus tour of Europe, a Hawaiian cruise and my all-time favourite, and our last trip, an Alaskan cruise.
As no medications were available for PH in 1984, I wasn’t prescribed medication until 2005. At this time, I was experiencing shortness of breath and finding simple activities taxing. I was started on Tracleer, which made a massive difference for the next six years. In 2011, I then began to experience chronic fatigue, heart palpitations, severe headaches and increased shortness of breath, and they added Adcirca. I experienced very few side effects from the medications. My career was in full swing, and I was also the primary caregiver for my mother, who had recently been diagnosed with dementia.
In 2011, in consultation with my ACHD cardiologist, I reduced my work week from 5 to 4 days to give me the extra time to recover and recuperate. Therefore, I began to utilize my accumulated sick leave to accommodate this shortened work week. During my scheduled appointment with my cardiologist in December 2012, I discussed with him my inability to perform my job on a 4-day work schedule and the occurrence of new symptoms which had developed during the past six months, including chest tightness and dizziness. My work schedule should be reduced again to a 3-day work week in an attempt to alleviate some of these symptoms.
By June 2013, it had become apparent to me that I could no longer function in a typical work environment without causing myself increased exhaustion, pain, discomfort and risk associated with my heart condition. It had become impossible for me to regain enough energy to maintain a 3-day work week and attempt to perform my job professionally. 
I went on long-term disability and was granted a medical pension. I continued to suffer from constant shortness of breath, severe headaches, dizziness, and heart palpitations. In 2017, Uptravi was added to provide triple therapy. I had to deal with a few more side effects this time, but we titrated slowly, and I was able to reach the maximum dose. In the last year, I’ve been noticing increased shortness of breath with very little activity and constant chronic fatigue.
Has my life been easy? Certainly not; over the past 40 years, there have been ups and downs, especially as I get older. I’ve learned to take it easy, do what I can, and then call it a day. My days of having a “to-do list” with a dozen things on it are gone. As my husband always reminds me, no more “go-go gadget!” Lol.  When I get up, I decide what I want to do based on my energy levels. I try to get a few things done each day, depending on how I feel. If they get done, then it’s been a good day. If they don’t, well, there’s always tomorrow…
I’ve never let my diagnosis define who I am. I’ve always tried to live my life to the fullest and enjoy the simple things. My advice is to keep smiling and never give up!
Contributed by Suzanne Martin Wagnell, Living with Eisenmenger’s Syndrome and PAH since 1984, Larder Lake, ON
Life's Twists and Turns: My Story of Living with PH for Over 40 Years

Suzanne Martin Wagnell, Patient, Larder Lake, ON

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