I'm Aware That I'm Rare: Tara Suplicki

Pulmonary hypertension patient Tara Suplicki was misdiagnosed with “exercise induced asthma” for 20 years. Two decades later, Tara has become a passionate support group leader and PH advocate focused on helping newly diagnosed patients and educating the public about the importance of early diagnosis.

Transcript:

My name is Tara Suplicki from Hopatcong, New Jersey.

I was diagnosed with exercise-induced asthma at age 10. Every time I ran around, my lips would turn blue, so my mom took me to the doctor, and I would be short of breath and the doctor says, “She has exercise-induced asthma. She can’t take gym anymore.” My parents said “OK,” so I got a note from the doctor and an inhaler, and so I didn’t have to take gym anymore from age 10.

When I turned 30, my great aunt was really sick in Florida, so we flew down to Florida to say goodbye to her and we were walking around Tarpon Springs and I was getting short of breath. My mom says, “You’re wheezing. Take your inhaler.” I took my inhaler so many times that trip I ran out of my inhaler.

We came back up to New Jersey and it was a really big sales month for me that month so I couldn’t make a doctor’s appointment. I turned 30 that month and I walked up the two flights of stairs after my 30th birthday at work and I passed out. I did that the next day too, and I got really good at getting people not to call the ambulance. At the end of that month, I walked up the four stairs from my mom’s deck into her kitchen and I passed out. I got her not to call the ambulance but I promised her that I would go see the doctor and get my inhaler refilled.

I went to the doctor’s office and a nurse came in and took my blood pressure, another nurse came in and did an EKG on me. My doctor walked in and said, “I think you’re having a heart attack. I’ve already called an ambulance for you.” I burst into tears. I went down to the ER and they gave me two treatments for asthma after running some tests, but when I was sitting down my O2 levels went up. They didn’t find anything else wrong with me. When I walked from the bed of the ER to outside, where my friend was waiting for me, my doctor was outside having a smoke. He said, “You’re short of breath again?” I said, “Yeah.” He said, “You really need to go see a cardiologist. Go see your family doctor, get a referral.” I went and saw a cardiologist, and by the time I got from the parking lot into his office I was short of breath. He said, “You’re short of breath?” I said, “That’s why I’m here to see you.”

They took me back there and they did some tests. The heart doctor walked in and he said, “I think you have a rare lung disease called idiopathic pulmonary hypertension.” He ran some tests that day. I was there for eight hours. He told me a little more about the disease. He had just got back from a conference on it. He said, “I really want you to go see a pulmonologist about it.” He recommended one and I went on and saw him that week. He seconded the heart doctor’s opinion. They started getting me on some ideas on what I could be taking, and that’s my path to getting here.

When the pulmonary doctor did all of the testing on me to try to figure out whether it was pulmonary hypertension or not, he came into the room after I did the series of breathing tests. He said, “You don’t have asthma. There’s no asthma.” “Well that makes sense,” I said, “because every time I ran around the inhaler really didn’t help.” He said, “Yeah, if you’d come in at age 10 and we’d done some kind of echocardiogram on you or we’d done breathing tests on you, it would have shown that you didn’t have asthma, but back in 1988, we probably would have patted your parents on the shoulders and said, “She has six months to live.’” They probably would never have had their fifth child, and they probably would have put me in a bubble and I never would have live the life that I lived. It would have been a much different life for me. I’m sort of glad that we thought I had asthma my entire life and I never had to run around to do all those funny things in gym class, but it is what it is.

I felt very blessed to have this disease, and not so many other terrible diseases. I feel so blessed to have met all the people I’ve met with this disease. I know that God only gives us what we can handle, but I feel blessed that I was able to retire from my job early, that I was able to get involved with these organizations that I’ve been able to get involved with, that I’m able to be a support group leader for people who are being newly diagnosed or for people who have this disease for such a long time, that I’m able to help and lead and use my talents just to be able to use everything that I learned in college and use everything that I learned when I was in the working field and use them all to shape and to help people who are newly diagnosed. I was terrified when I was newly diagnosed. I was just so scared.

The people that I met through different organizations, they helped to calm my fears and they helped to teach me how to live again, and they helped me to show me that there is life after diagnosis. Now, I’m able to help do those same things for newly-diagnosed people and it’s such a blessing in my life to be able to do these things for other people. It brings me such joy to be able to do that.

Awareness is very important to me because I believe that the more we make people aware of this disease, the more people may be misdiagnosed, but if we make more people aware of it, the more people may be diagnosed correctly because some people may think they’ve had asthma their entire lives. Maybe if they learn more about the disease, then they may question their doctors more. We can get Congress more aware so we can get our bills passed. We can get more funding.

The more awareness we have for our disease, the more people learn. It’s very important for people to learn about what’s around them so they’re not ignorant. Ignorance just causes fear and it causes people just to not know things. The more they know about something the more they can be cognizant of they way they act, and just they way they treat people.

I’m Tara Suplicki and I’m aware that I’m rare.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod