“There is light at the end of the tunnel, and you are more than just PH. We will fight and we will win!”
Chelsea Kennedy, 27, has been living with pulmonary hypertension (PH) since 2018. She lives with her five children, husband and three dogs in Winston-Salem, North Carolina. She is studying cardiovascular technology, which she became interested in after her PH diagnosis. She will graduate in May 2020. This is her story:
At age 5, I was diagnosed with asthma and juvenile rheumatoid arthritis (JRA). I grew out of those illnesses and went on to play basketball from third grade until I graduated from high school. I was big into sports and was always running. In high school, I sometimes felt like I was short of breath. I figured I was just overdoing it because I didn’t know when to stop. I went to the doctor, who did an echocardiogram, which was normal, and was diagnosed with exercise-induced asthma.
In 2013, I had my first child and felt great throughout the pregnancy. In 2015, I started having frequent premature ventricular contractions (PVCs), which are extra heartbeats that can cause a fluttering feeling in the chest. The doctors prescribed medicine to stop them, but said they were anxiety related. They said that I was too young to have anything serious.
In 2016, I was pregnant with my son, and I just didn’t feel right throughout the whole pregnancy. I felt something was wrong, but the doctors still said it was anxiety. In 2017, he was born, and that’s when I really started feeling bad. Another echo showed there was nothing structurally wrong with my heart.
In spring 2018, I started having spells where I would pass out when walking upstairs. I couldn’t really keep up with the kids, so I got another echo. It showed the right side of my heart was enlarged and not functioning well. The doctor couldn’t see me for another two weeks, and I kept getting worse.
In June 2018, I had a bad spell going upstairs, so my husband took me to the emergency room and demanded they figured out what was wrong. They admitted me and did many tests. On June 21, they diagnosed me with idiopathic pulmonary hypertension (PH) at age 25.
The doctors who were caring for me weren’t specialists in that field, so I only heard the worst-case scenarios. I was devastated. I wasn’t going to see my children grow up. After we went home, I found out about the clinics at Duke University Hospital and immediately scheduled an appointment. They got me in, started me on medicine and gave me hope. I went into a depression for a few months, and I just couldn’t think positively about my outcome. As the months went by, I slowly started feeling better, and the echo result were getting better, too.
Fast forward to today. I still have to keep myself from worrying about my future, but I can walk around without passing out. My pressures aren’t perfect, but they are much better than a year and a half ago. I went back to school to continue on my career path, and I am trying hard to not let PH get the best of me.
I have good days and bad days. My life has slowed down a lot since 2018. But I know we are never promised tomorrow so I have to live to the fullest. My husband is my rock and always keeps my mind from wandering in the wrong direction.
I don’t know what my future holds, but none of us do. All I know is that I am alive, and the medicine is doing its job. We can’t stop living because we get this horrible disease. We can’t let PH win. I have a family to live for.
My advice for newly diagnosed patients is to get a team of doctors who truly specialize in PH. Even if you have to drive an hour and a half to get to them like I do, it will be worth it. Also, it’s OK to be sad, but remember there is light at the end of the tunnel, and you are more than just PH. We will fight and we will win!