In 1975, I was diagnosed with sarcoidosis, which are cell clusters that infiltrate organs such as the lungs. I was 25. Before my diagnosis, I noticed mundane activities such as climbing the stairs or walking a long distance made it hard to breathe. It seemed every winter, with the influx of viruses and the dry air from heating systems, I would become ill. The only treatment that worked was an antibiotic for bronchial inflammation and Prednisone, a steroid to clear the air passages.

In 2016, I relocated to Charlotte from Boston. I was hospitalized that December and again in March 2017. Following these two trips to the hospital, I wondered if the problem was in my home. I had a company administer an air quality test for possible pollutants or allergens in my house, followed by an extensive carpet cleaning and new air filters. I placed humidifiers in several rooms and changed the HVAC filters after having it inspected and cleaned. None of that helped my breathing problems.

In December 2017, I received a cardiac catheterization test, which determined I had pulmonary arterial hypertension.

Trial and error

Treating PAH became my priority. I endured a lot of trial and error to find the best medicine and dosage for my condition. I started with several high blood pressure medicines, like Losartan, but stopped because of side effects, such as persistent coughing and losing my voice. I now take 12 medicines a day, including tadalafil, Prednisone and ambrisentan. In October 2018, I started using an oxygen machine recommended by my doctor, although the thought of having one of these large tanks at home though was demoralizing.

I came home that day and began praying, not for His healing, but to thank God for all the blessings I had received and for the strength to endure what was ahead.

I immediately obtained a smaller portable oxygen concentrator that provided mobility to stay socially active outside. For home, I have a larger continuous-flow air concentrator with long tubing, which allows me to walk around the whole house. I wanted to remain as active as possible.

Keep on moving

For my mental health, I started journaling. It allowed me to document my thoughts and feelings about life and track my health condition. I was determined to avoid depression.

After more than two years, I compiled these entries into a memoir, “Keep On Moving – My Journey In the Fourth Quarter” that I self-published in 2021. Copies are available on Amazon and Barnes and Noble. My second book, a young adult novel called, “It’s Time for MO,” will be published on Dec. 5 – the anniversary of my PH diagnosis.

To keep my mind active, I also play games such as The New York Times Spelling Bee, Wordle and Sudoku.

Focusing on my physical health has been a little more challenging. I never liked exercising, and having PAH has not made me like it any better. I’ll sometimes walk in natural environments like a park, but I prefer walking on a treadmill or at the grocery store. I also reduced my sugar and alcohol intake to decrease my body weight and recently completed a rehab program to improve my mobility and physical strength.

Of course, remaining active requires planning to ensure I have sufficient battery life or charging capabilities for my portable machine, but it’s worth it to continue to do the activities that I love.

Five years since being diagnosed, I have adjusted to a new normal. Much of what I’m able to do is because of the help of my family and friends who keep me motivated to live. We go out to social events every week, whether it’s a jazz concert or other cultural event, club meeting, attending church or dining out.

At the top of my list though is to travel as much as I can. My goal is to stay active, socially connected and not give up on life. As long as my medicines are doing what they’re meant to do, I must take care of the rest.