By Eileen Lepionka
“I could barely make the walk through the yard, which was only about 150 feet.”
“My Pulmonary Arterial Hypertension (PAH) journey began in August 2014. I was an active salesperson, selling toys at a hospital gift shop on that fateful day. While dragging my sample bag through the parking lot, I became extremely short of breath, and my heart was beating very hard. I got through my sales call and proceeded to my stop for the night which happened to be at my Mom’s house in west Pennsylvania. Luckily for me, my sister lived next door and was a retired nurse. I could barely make the walk through the yard, which was only about 150 feet. After relaying my story to her, we decided I needed to call my family doctor ASAP. That visit led me to have an EKG, and having that doctor run it down (quickly, I might add) to the cardiologist on the floor below. Well…I was immediately seen that afternoon and told I would be having a left heart catheterization (LHC) the very next day as he suspected a blockage. The LHC was very easy, through the wrist. Imagine my surprise to have the cardiologist tell me, “I have good news and bad news…the good news is that it isn’t a blockage or real heart issues. The bad news is that I suspect it’s your lungs.”
“Never was PAH discussed, but I was put through eight weeks of blood tests, VQ scans, echo cardiograms, six-minute walk tests and pulmonary function tests at one of our Columbus hospitals. At that point, I was getting worse with shortness of breath, heart thudding etc. I was told they suspected PAH but wanted to send me to a true pulmonologist at Ohio State University (OSU) Ross Heart Health Hospital. I was seen in early December 2014 and had my first (of many) right heart caths. I got my extremely bewildering diagnosis of PAH. I am a non-smoker and couldn’t figure out why I got a lung disease.
“My specialist and great care team at OSU explained all about my new normal. I was fortunate to be able to take part in the Adempas/Riociguat drug trials. In my new state, I immediately got started on a lifelong low-sodium lifestyle to aid my poor heart and lungs. What an eye opener that was! While I never used the salt shaker, it’s the “salt faker” in processed foods and restaurant foods that threw me for a loop! I would stand for hours in “The Food Library,” aka the grocery store, reading labels and finding foods I could eat. The first holidays were the worst in having to limit my sodium intake. I gradually got accustomed to my new food lifestyle. OSU continued to add new medications such as Letaris and Uptravi. I made the decision to never miss a dose of medications, and religiously followed my schedules. Being on two diuretics further helps me. I began walking for health and was doing well. I did determine it was time to retire from the traveling road sales life as my food and prescription requirements were getting more and more difficult. I was able to do so in January 2018 and have been busy with cooking, pulmonary rehab, traveling and taking care of myself. A new twist was being told I needed supplemental O2 after a recent six-minute walk test. Oh boy…I now have a home concentrator for overnight O2 and a portable for walking and gym time. Another interesting experience was eight weeks of pulmonary rehab at OSU, three days a week. It was amazing to see exactly what I could physically do at the start and how much I had progressed in eight weeks in terms of stamina, strength and positive outlook!
“It’s been a long journey, both physically and mentally since 2014! Thankfully, I have the support of my wonderful husband who not only eats my low-sodium meals, he helps cook them! He attends my PAH medical visits and all tests. I have lost over 45 pounds with this new lifestyle. Now in my fifth year, I know how fortunate I am to have gotten a fairly quick diagnosis, a true treatment plan and world-class healthcare. While it’s a different lifestyle with low sodium, limitations of O2 and stamina at times…I am here and enjoying my retired life! BTW…you may have to turn the packages back around at the grocery store. All the labels will be showing the nutritional information if I have been in the aisle…”