“Through it all, I am a survivor! I will not be defined by this disease. I will continue to do the things I love to do!”

by Constance Claypole

“I was born in Rutland, Vermont, in 1947. I’ve lived in many locations in my early life, but finally settled in Galveston, Texas. I love it here, my first dream come true!

“I have been so blessed to survive and overcome many diseases, such as being a Shriners Hospital for Children graduate in 1957. I was then as healthy as could be for years, until I turned 59 in 2006. My medical history then became a quite unique series of events. It started when I was diagnosed with uterine cancer. The cancer was surgically removed, and I have been cancer free ever since!

“In 2007 I had cardiac failure due to sepsis (my heart stopped, and the doctors brought me back). Thankfully, my heart was totally fine afterward, and I only took medication for six months. In 2013, I had an ischemic stroke and was given a clot-busting drug called tissue plasminogen activator or tPA, the clot-buster drug. Within an hour, you could not even tell that I had a stroke (I take a low-dose aspirin every day to prevent another). I have been very blessed in my lifetime. I am so thankful to God and the doctors for these blessings.

“Aug. 24 2016, while at choir rehearsal, I became extremely short of breath with right-side chest pain. My best friend Linda picked me up and took me to the ER. I was admitted me to the hospital and underwent testing for four days. The final diagnosis was pulmonary arterial hypertension (PAH). Now, this very rare disease has become my greatest challenge! There is no cure—only new lungs from a transplant will ‘cure’ it.

“Thankfully, over the past 20 years there have been advancements with medications. Some medications can relieve certain PAH symptoms such as shortness of breath and fatigue. I currently take sildenafil and ambrisentan daily, as well as oxygen 24/7 and diuretics. With an oxygen concentrator at home and a backpack to carry small 02 bottles, I have continued to work, go out with friends and visit the beach.

“My PH story doesn’t seem remarkable to me. Many people living with pulmonary hypertension also deal with other debilitating diseases such as scleroderma, heart failure, CTEPH (clots in the lungs), and more. The biggest challenge is that PH is so rare that few people have heard of it – even many doctors. Research is key, and for that, funding is needed. There are studies that may include reversing and/or curing PH, and we need more.

“Through it all, I am a survivor! I will not be defined by this disease. I will continue to do the things I love to do!”