Left-Sided Heart Disease & Pulmonary Hypertension

I was diagnosed with Pulmonary Hypertension in 2019.  After tests & procedures, it was determined I likely had group 2 and 3 PH. Group 2 is heart disease that has caused Pulmonary Hypertension. My specific issues stem from left-sided heart issues from birth, also referred to as congenital heart disease.  Along with my heart issues, I developed lung issues during infancy. Both of my parents were heavy smokers, my dad being the heaviest. I had been diagnosed plenty of times during infancy and childhood with bronchitis and pneumonia, which eventually carried into adulthood & developed into asthma and COPD. These have also added extra complications to my heart function. My Pulmonary Hypertension was considered secondary to my heart dysfunction. This meant that in order to treat my PH, my heart condition had to be treated.

My congenital issues were a coarctation of the aorta (narrowing of the descending aorta), which carries oxygenated blood from the heart to the brain and the rest of the body. The aorta was surgically corrected when I was 4 months old, but would later become an issue as I aged. I also have a bicuspid aortic valve, which allows for regurgitation of blood back into the left side of my heart, creating a backlog of blood & increased left-sided heart pressures, plus a backlog of blood to my lungs. My left heart has to work harder to push blood out to the aorta. There is a septal defect between my atriums of about 0.5 cm in diameter. The three main arteries that branch off the ascending aorta and take oxygenated blood to my neck, head, and arms are, in a sense, twisted and not in the usual order. Due to my left heart having to work harder from increased pressures, it can wear down quicker, and the walls can become thick & unable to pump or fill properly. Even though Pulmonary Hypertension is known to affect the right heart, both sides of my heart could eventually fail due to the left-sided issues.

I always seemed to run out of energy growing up, but I usually pushed through as I knew nothing different. Over the years, my heart conditions would be monitored, but my lung conditions were not. At times in my twenties and thirties, other people would notice my shortness of breath, but it was not noticeable to me as it was “my normal.” I was not aware that my heart issues could turn into what they did. The only thing my cardiologist focused on was my aortic valve function and that one day, in my 50s or 60s, I might need a valve replacement. I had no idea that I carried a risk of developing Pulmonary Hypertension. 5 years before diagnosis, my cardiologist noted a possibility of mild PH but did not mention it. I had developed severe shortness of breath, began gaining weight, and my systemic blood pressure started increasing. By this time, I was using supplemental oxygen during exertion and sometimes, while at rest. Due to these symptoms and my inability to be active, I developed diabetes, liver disease, etc.

Work became very demanding on my body and emotions as I tried to keep up the same pace as before my symptoms developed. Home Care nursing was a stressful career, although it had its rewarding times. I often visited palliative clients, but it got to a point where I needed to rest or take breaks before I could look after them. Eventually, I had to give that up to start looking after myself. My heart eventually developed diastolic dysfunction, and I started retaining more and more fluid and swelling in my extremities. Daily tasks like showering, getting dressed, walking up the stairs, etc., became very difficult. I had to take breaks during each process & between each step. The medications I was given were to help control fluid buildup, systemic blood pressure, mood & anxiety, and lung function, but none that would directly treat pulmonary hypertension because it was secondary to my heart disease. I gained 84 pounds, likely due to fluid retention, anxiety, inactivity, etc., but I have been on a weight loss journey, which has been a long, very difficult process. I have lost 49 pounds and am still working on it. My symptoms have improved, and I am considering employment in a treatment center. I try to view my heart (& lungs) as my friends and a part of me that has worked hard to bring me where I am today.

Dawn Clarke, Hagersville, ON