I suffered from osteoarthritis for many years, or so I was told. I broke bones easily and had two knee replacements, one in 2013 and one in 2017. I had an ankle replacement in 2018, which took over a year to recover from, and in 2019, I fell and fractured my wrist, requiring three surgeries. These surgeries set me back physically, and then Covid 19 hit.
I was very immobile and didn't go outdoors very often. My weight increased, and I was increasingly short of breath, which I attributed to my inactivity. At one point, concern about my increased breathlessness led me to the hospital, where I had several tests. I was sent home on antibiotics for pneumonia. Several doctors told me I had COPD from smoking, even though I have never smoked in my entire life or used any illicit substances.
I did, however, get a referral to a respiratory specialist who ordered an angiogram. Even though I continued to feel worse had low blood oxygen levels and more severe shortness of breath, I decided to wait for my angiogram rather than return to the emergency department.
I had my right and left-sided angiogram in July of 2020. After the test, my cardiologist informed me that I had severe pulmonary hypertension, and I was being transferred to the Intensive Care Unit (ICU). After eight days in the ICU, undergoing numerous tests, I was transferred to a bigger teaching hospital specializing in pulmonary hypertension. It seems unreal to have spent my 65th birthday in an ambulance!
After numerous blood tests and other procedures, they discovered I had scleroderma that caused the pulmonary hypertension. I was shocked, especially when the cardiologist who did my angiogram told me I would probably need a lung or heart transplant. This scared my husband, and while my family, brothers and sisters-in-law were very supportive, they were unable to visit me in the hospital due to COVID-19. I felt scared and alone.
I met a nurse practitioner who worked with the Pulmonary Function team, who visited me a few times in the hospital and gave me valuable information about my diagnosis. My fear was still there, but I felt I had to arm myself with knowledge of my disease to cope.
The pulmonary function newsletter that I receive monthly has proven to be vital for my coping mechanisms. I enjoy reading about treatments and medications and how others with similar diagnoses continue enjoying their lives. I have participated in numerous e-learning sessions that have helped me immensely. My husband and I were able to attend the Pulmonary Hypertension Conference in Ottawa this past June, and we both felt stronger and more confident in dealing with our newly defined lifestyle.
I did have a setback in March 2022 that sent me to the hospital with heart failure. I came home after two weeks wearing oxygen. I felt that I couldn't continue this way if I wanted to live my life. Both my husband and I are retired now, and I didn't want to go on in fear.
My pulmonary specialist ordered cardiac and pulmonary rehabilitation, which, due to COVID-19, was by video. I took the programs faithfully but wasn't motivated until I retook the pulmonary rehabilitation program live at the hospital. My husband and I got a YMCA membership and started going five days a week. My husband thinks that I'm trying to kill him!
The exercise has done wonders for my physical and mental health, however. I have some bad days, but I learned to listen to my body and rest when needed. I follow the instructions for fluids and sodium restrictions. It is a daily challenge, but the alternative isn't something that I'm comfortable with. I work with my doctors in my hometown and the team at the Toronto Hospital, who closely follow my progress, and I will continue to do my best daily and live my life to the fullest.