“I wanted to give up, but with lots of prayers and faith, I eventually started improving.”

By Lorraine Polston

Lorraine Polston of Amarillo, Texas, was diagnosed with idiopathic pulmonary arterial hypertension (PAH) in 2001. A registered nurse since 1992, she and her husband have three sons and five stepdaughters. This is her story.

My journey began in 2001. I was having some shortness of breath and syncope (fainting) spells. I also had some ascites (abnormal buildup of fluid in the abdomen) and swelling in my ankles. I was working [at the hospital] when I decided to listen to my heart sounds and noticed a murmur. I contacted a cardiologist, who performed an echocardiogram. It showed that my pulmonary pressures were 110 mmHg, so he sent me to a pulmonologist. That doctor referred me to a pulmonologist in Houston who specialized in pulmonary hypertension (PH).

I was hospitalized for three weeks, and the doctor confirmed my diagnosis through a right heart catherization (RHC). My medical team inserted a central line, started me on Flolan and sent me home. My nursing career abruptly came to a stop, and I was considered disabled. My doctor told me that I would probably live only until 2003 to 2005.

Due to the PH, I developed congestive heart failure and right-heart enlargement. I was put on Digoxin and diuretics for a couple of years. When my heart size returned to normal, I was then taken off the heart meds and diuretics. I remained on the Flolan pump and Coumadin.

My life had dramatically changed. I kept developing ascites and had to get my abdomen drained every two weeks. They were pulling 10 liters of fluid. I was down to 96 pounds. I was on oxygen at night until about 2013. In 2007, I developed an umbilical hernia, and my small bowel twisted. I had to have an emergency surgery. By the grace of God, I made it through surgery and went home.

My doctor in Houston transferred me to a doctor in Dallas in 2008, and I was actually beginning to improve. There wasn’t much that I did; I give all the glory to God. I kept my faith, kept positive and did lots of praying. In 2010, my doctor asked if I wanted to move to pills and remove the catheter for the Flolan pump. I decided to give it a try. I was ready to get off that pump after being hospitalized in 2005 with a methicillin-resistant Staphylococcus aureus infection in my central line and bloodstream. That was another battle I had to fight.

She put me on Adcirca and Letairis, and I’m still responding well. I also fought breast cancer in 2014, which required three surgeries. In 2011, after the pump was removed, I decided to go back to the gym and enjoy what I’ve always liked, fitness.

This year, I got my RN license back. I’m back to practicing; I’m active in the gym; and my lifestyle has improved. I stopped using oxygen in 2013. My last RHC showed pulmonary pressures of 28 mmHg! There is life with PH. I also can go swimming after 10 years of no swimming.

Inspire and give hope to the PH community by sharing your experience with PH as a patient or caregiver. Submit your story to PHA’s Right Heart blog.