Phighting PH with Hope

By Gerry, Pulmonary arterial hypertension, United States, February 26, 2020

Gerry

“My name is Gerry, and I am 30-years-old. My husband is in the Army and we have identical 2 year old twin boys.

“In January 2018, we relocated to Colorado Springs, Colorado for my husband’s job. My earliest memory of difficulty breathing was when we arrived in Colorado – but I attributed it to the high altitude. As the months went on, there was nothing significant that I can think of until my husband left for six weeks. In June 2018, I noticed that I was having a harder time breathing and found myself more fatigued than usual. I attributed this to raising twin boys, and simply being out of shape in high altitude. I joined a yoga studio and started trying to be more active. It didn’t work.

“At the end of July, I started gaining weight, even though I was working out more. I was even more tired than before and anything active required me to stop to catch my breath. I continued to attribute this to being out of shape and pushed myself harder.

“During the first week of September, I realized I had gained almost 20 pounds over the course of two weeks. I thought, OMG we’re pregnant with twins, AGAIN. I took several pregnancy tests, all of which were negative. I was convinced they were wrong. My husband and I debated on what we should do; at the same time, we were flying home to North Carolina for a wedding. It was mid-September while we were in North Carolina that my dad pointed out that my legs were swollen. The next morning, I woke up and my legs were as big as they would be if I were 8 months pregnant. My dad asked if I was sure I wasn’t, and I said no.

“I scheduled a primary care appointment for Tuesday when we got back to Colorado. I told the doctor I thought the swelling might be related to pregnancy or a thyroid problem, self-diagnosed of course. She took my word for it and ordered a full panel of blood tests for both. I went home that day and was told that we would have lab results in 48 hours. The next day I was so tired, I could barely stay awake. I had no appetite and I could barely catch my breath. I told my husband that I was scared — something was wrong. I went to bed hoping to sleep it off. The next morning, I woke up and couldn’t breathe. I could barely stand because my legs were so swollen. I went to the emergency room.

“The admitting nurses asked me what my symptoms were, and I hashed this whole story to them. The nurse taking my name asked me if I had heart failure in my family and I told her no. She asked me if I had ever been seen for a heart problem. Also no. She said it sounded like heart failure to her and she ordered an EKG while I was filling out paperwork. It was 100 miles an hour after that. EKGs, echocardiograms, ultrasounds, blood tests, x-rays — you name it, I had it done. I called my husband, told him that they had confirmed I had congestive heart failure and that he needed to come to the hospital. They diagnosed me that night with idiopathic pulmonary arterial hypertension (IPAH). They didn’t know what was causing it, and they didn’t know why it was suddenly happening, but they were sure they caught it early. They suggested that I go to a specialist at the pulmonary clinic in Denver.

“I went to Denver a week later, and my doctor asked that I be admitted to the hospital so that they could run their own tests and get a better idea of what was happening. I was admitted a week later, with the expectancy that I would be there a couple days and go home on oral medicine. The night I was admitted they did a thorough echo on my heart and realized that the severity of my PAH was not just moderate. They found that I was severely sick and that I needed immediate treatment or I would die. The shock of this diagnosis was unreal to me. I cried, I called my husband, I called my parents who were half way across the country, I called my closest friends and I cried. I let the fear overwhelm me as I let it sink in that life was about to look really different. The doctors did a right heart catheterization and put in a central line that administers continuous infusions of Remodulin via an IV pump, 24/7/365.

“Life changed drastically for me in a matter of weeks. Fast-forward a month later. I am back to feeling like myself. I’m able to take care of my twin boys and hang out with my husband. We moved across the country to Alabama where we are currently stationed. PH has changed my life, but I’m eternally grateful that God had my best interest in mind when He sent us to Colorado and allowed me to be treated by the best doctors in the country."

"After months of line infections, blood infections and hospitalizations something changed and 10 months later my condition went from severe to almost completely normal. The pressures went down and my doctors told me they believed I was better enough to be able to get off my pump and be completely on oral medicine. July 2019 I got off my pump and am now on only oral medication."

"I’m thankful for the clinical research and I hope that my story will be one that helps raise awareness for the seriousness and severity of PH.”

*Find others with Pulmonary Hypertension (PHon RareConnect, the online platform for people affected by rare diseases

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