My motto for living: Today, I will choose joy
This is DeLois Tweety’s story:
My story began in 1977. I was diagnosed with Hodgkin’s lymphoma, and was treated with high doses of radiation to my neck, chest, and abdomen.
Later, I was told I would eventually, probably, need heart valve(s) replacement. I didn’t give it much thought until later, when a murmur in my heart was discovered. It was not unusual to experience palpitations and occasional shortness of breath. However, I kept working (as an occupational therapist), caring for my family, and living a normal life.
In late 2019, subtle arrhythmias became more noticeable, with more bouts of shortness of breath. January 2020 started with cardiology and pulmonary appointments, including a sleep study. The year became a year of sickness and hospitalizations for me.
I had a heart attack that February, and later in the month, I was hospitalized locally for severe shortness of breath and pericardial and bilateral pulmonary effusions. Within a week, I was airlifted to hospital for critical care with acute respiratory failure.
I was diagnosed with valve disease, right-sided heart failure, restrictive cardiomyopathy, atrial fibrillation, sleep apnea, and pulmonary hypertension (PH) with severe pulmonary artery systolic pressure. I had never heard of PH, yet my journey had begun. In June 2020, I had an aortic valve replacement.
I had to quit work after 20 years working as a therapist. It was hard to transition from being a caregiver to being a patient. It saddens me to have to rely on others for assistance but I am thankful for the support of my family and friends.
My biggest struggle is to listen to my body and respond accordingly. I have many days of fatigue, accompanied by shortness of breath. These episodes can last from two days to a week. When it’s longer, I must be careful not to fall into depression. I haven’t yet, but I have had some very sad days. When that happens, I pray, journal, or sit outside and try to read.
The hardest thing is to know that right-sided heart failure and PH are chronic. I’ve had other illnesses, but a chronic disease with no cure will wear on your mind if you allow it.
Having these chronic diseases reminds me to be grateful every morning and to be more mindful of others and their struggles. I try to appreciate my family and friends more, be continuously thankful for my doctors, notice the smallest joys in life, renew my faith daily, and enjoy my children and grandchildren and cherish every day I have with them. My motto: Today, I will choose joy.
In recognition of Pulmonary Hypertension Awareness Month in November, the PHCommunity Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by PH, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #PHSpotlight, or read the full series.