“I have a long road ahead of me, but one day at a time, right?”
Jenny Phillips, 52, lives in Woodridge, Illinois. She has a sister, two brothers (including her twin) and nieces and nephews. An army veteran, she has been a dispatcher for the Illinois State Police for 17 years. She was diagnosed with pulmonary hypertension (PH) in November 2019. She shared her story on Facebook on Rare Disease Day in February. This version is edited for style and clarity:
The purpose of this post is not to put a spotlight on me but on a rare and incurable disease. I have been hesitant to make a post about my current health diagnosis, but I think I have finally come to terms (mostly) with what I’ve been going through, and I wanted to bring awareness to it. If I can help even one person by bringing awareness to it, I’ve helped. This disease is unknown to many people, including a lot of doctors.
For quite a while, years even, I experienced extreme shortness of breath, inability to walk short distances without having to stop to catch my breath, and inability to climb steps without becoming extremely winded and fatigued all of the time. In the past, I had been in pretty good shape. But since becoming a police dispatcher, I had put on quite a bit of weight and wasn’t as active. I knew I was out of shape, but I didn’t think I was that out of shape! I had also been experiencing nausea and vomiting most mornings, which I found out later was due to fluid retention putting pressure on my organs. I lost 50 pounds.
I went to see a few different doctors, and in November 2019, one angel doctor took the time to really listen to me and sent me to get an echocardiogram. My echo discovered the right side of my heart was enlarged. I had heart failure. I was immediately admitted into the emergency room (on my mom’s birthday), which resulted in a four-day stay in the hospital. I had almost every imaginable test run on me.
The diagnosis was pulmonary arterial hypertension (PAH), which means high blood pressure in the lungs. It’s a lung disease that causes the pulmonary arteries to thicken, so the body can’t get the oxygen it needs, and the heart has to work much harder to pump blood through the lungs. This extra work damages the heart, causing PH patients to experience breathlessness, fatigue and fainting from everyday activities. PH is a progressive disease for which there is currently no cure. It affects people of every age, ethnic background and gender. Doctors don’t know how some patients get it. (For some it’s heredity, and for others, it’s from other existing health issues.)
I was quickly set up with a pulmonary and cardiac specialist who put me on numerous medications. I went through this experience with little help from family and friends because I’ve never been one to ask for help or handouts. The whole process, from the hospital to diagnosis, to first appointments and getting approved medications in place, took over two months. I was afraid, confused, frustrated and crying a lot. I think when people can’t see what is wrong with you, they think there is nothing really wrong with you.
Right now, I am on three medications, including a breathing treatment several times a day and a diuretic.
The goal is to keep this disease from progressing. Again, there is no cure. I can try only to maintain a normal life. I have a long road ahead of me, but one day at a time, right?