Samuel Hall’s pulmonary hypertension (PH) 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. Samuel, the inventor of the O2 Safety Strap, considers himself a sarcoidosis warrior. The Springfield, Missouri, resident talks to the Pulmonary Hypertension Association (PHA) to mark Sarcoidosis Awareness Month.
Q. Tell us about your diagnosis journey.
A. 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.
Q. How has your understanding of your conditions evolved?
A. First, I had to accept the fact that I was living with an incurable disease. Secondly, I learned 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.
Q. Why is important to self-advocate? How has it helped you manage your conditions?
A. 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.
Q. What helps you keep a positive attitude?
A. 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.
Q. What role has PHA played in your journey?
A. PHA is an amazing organization. It’s a true beacon of hope and a platform to bridge the gap between sarcoidosis and PH. Hopefully, it will allow me the opportunity to do even more as a patient advocate.
Q. What you would advise someone with sarcoidosis about PH?
A. Practice the healthiest lifestyle possible. Improve your gut health, exercise and stay positive!!
Q? What is the connection between PH and sarcoidosis?
A: PH can develop in patients with sarcoidosis, adversely affecting symptoms and prognosis, according to Alicia Gerke, M.D., M.B.A., associate professor of internal medicine-pulmonary, critical care and occupational medicine at the University of Iowa’s Carver College of Medicine. PH can result from inflammation of the blood vessels in the lung; enlarged lymph nodes compressing the pulmonary arteries; left heart dysfunction due to granulomatous involvement of the heart tissue; lung destruction due to fibrosis; or it can resemble idiopathic pulmonary arterial hypertension in rare cases. Sarcoidosis patients should consider screening for PH if their breathing difficulties worsen; they show signs of heart dysfunction such as lower extremity swelling or chest tightness; or their ability to walk decreases.
Physicians might recommend an echocardiogram if they note a decrease in diffusing capacity on pulmonary function testing or an enlarged pulmonary artery diameter on chest imaging, Gerke says. Because of the complexity of the diagnosis, each sarcoidosis patient’s PH treatment is different. “Recognizing and addressing this important complication can improve quality of life in many patients,” she says.
If you or a loved one have sarcoidosis, there is an elevated risk of developing PH. Read more about sarcoidosis associated PH – or SAPH – on the PHA website. Connect with other people living with PH and associated conditions on PHA’s PH Plus, a closed PHA-administered Facebook group.