Samuel Hall’s pulmonary hypertension developed nearly a decade after he was diagnosed with sarcoidosis. The inflammatory disease can affect many organs but often causes lung issues and shortness of breath on exertion. Hall, of Springfield, Missouri, invented the O2 Safety Strap.
I was diagnosed with PH in spring 2012, nine years after I was diagnosed with sarcoidosis and bronchiectasis. PH was the nail in the coffin so to speak. My life had already been turned upside down months before I was diagnosed when signs of PH began to show. I would feel out of breath just sitting, and I had dizzy spells, heart palpitations and swelling in my ankles.
I had an electrocardiogram and an echocardiogram but wasn’t diagnosed with PH until I fell sick with staphylococcus pneumoniae. By living a healthier lifestyle, I have improved the quality of my life.
Learning curve
I had to accept the fact that I was living with an incurable disease. Then I tried to learn as much about the conditions as possible. I did a lot of research and data digging. I combined information from doctors, specialists, pulmonary rehabs, support groups and internet research. I was lucky enough to find health care professionals to assist me with information and suggestions. They were a blessing.
Importance of self-advocacy
Managing my conditions is a must, given my circumstances. It’s just something you have to do. My advocating comes from knowing it is my purpose. I learn it, I support it, I share it. Communication is a necessity to staying healthy. I stay abreast of doctor appointments, and I am transparent with my specialist. Self-awareness is key.
Positive attitude
Faith and love get me through the bad days, and a good day is when I can be productive. I try to remember to not live in fear. I focus on what is most important and that there is still life to live.
I try to practice the healthiest lifestyle possible. It’s important to improve your gut health, exercise and stay positive.
