OUR JOURNEYS

Patient story

April Clemmons Hughes

I am a 10 year PH survivor. My name is April Clemmons Hughes and I am 44 years old. In 1995 I was running up a hill with my 3 year old Goddaughter. This became the first of many fainting experiences to occur. I have no idea how long I was unconscious but I was so thankful that my Goddaughter was sitting there beside me and had not gotten frightened and run off.

I went to a doctor and he said I could be pregnant, anemic, or they might have detected a slight valve problem in my heart. They ruled out pregnancy and anemia and referred me to a cardiologist. He said I was fine and just to take an antibiotic when I go to the dentist. Some time passed and I fainted again running up a flight of stairs. My husband said I wasn’t responding and my eyes rolled in the back of my head so he called 911. After the ambulance and hospital ordeal I went back to the cardiologist. Now his diagnosis was that I could have some tests run or a cardiac catheterization BUT is was up to me. I thought, “Up to me?” Who is the doctor here?” So needless to say I got a second opinion.

After a wide range of extensive tests, I did have the cardiac catheterization and was diagnosed with primary pulmonary hypertension (PPH). My pressures were extremely high and the doctor said the slightest thing could kill me and he gave me 2 years to live. We went to Chicago, IL to see a specialist and to St. Louis, MO to get information about a transplant. At that time the Flolan/ Prostacyclin had not been FDA approved and I was really reluctant to have them put a shunt in my chest anyway. I was fainting more frequently and getting worse. My doctor put me on bed rest. The Flolan/ Prostacyclin was approved and they put the Hickman Line in my chest in November 1996. I have had the same Hickman Line in ever since and only ONE infection in ten years.

This illness is life changing to patients and their families. It has been misdiagnosed for many years. The PH community is making enormous strides in advancement in treatments and information. I know one of the most important things that we can do is stay as knowledgeable about our conditions as possible. Knowledge is power. It is up to us to manage the illness or it will manage us. We must stay as current as we can about the new treatments available to us. My true Source of strength and healing is God. I am not on any oxygen and am able to work 40 + hours a week. I am very active in my church and my faith in God sustains me daily. “For in Him, I live, and move and have my being…” Acts 17:28

I don’t know where I’d be if it had not been for Jesus. I thank God for His faithfulness and I want to take this opportunity to publicly thank my family for all of their years of love, prayers and support. Especially my mother, Constance M. Clemmons, for always, always being there for me, no matter what the circumstances. I love you, Mom. To all my fellow patients that struggle with this illness, I believe we can look forward to many more years of an enjoyable, healthy, quality of life.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.