When were you diagnosed with PH?
I was diagnosed with PH at the age of 19. Thirteen years ago. At, the time I was living in Long Island, and was being my usually active self, when I realize the tasks of everyday living including walking were becoming extremely difficult. I remember being at the gym and doing a leg workout, and having to sit with my head between my legs from being so dizzy. That same summer, my mom came down to visit me from CT and as we were walking on Jones Beach, I couldn’t take more then 5 steps without having dizziness, ringing in my ears, and shortness of breath.
After finally passing out a few times, it was tine to see a cardiologist. And after several tests including an EKG, Echo Cardiogram and a right heart Catherization it was determined that I had primary pulmonary hypertension and was in stage 3. Being so young I didn’t quite fully understand how life threatening this disease was. Growing up as competitive dancer and being a personal trainer and weight lifting, I just wasn’t going to let this get in my way.
After responding to the first oral medication Traceller and being on Procardia XL I was back and able to perform my daily activities, and even went back to the gym to train and workout. With motivation behind me I decided to compete in a fitness competition, and I successfully did 3 years after being diagnosed. Along with competing in the Miss CT/Miss USA pageant with the platform of raising awareness for PH.
I’ve been a very good responder to the medication and have recently gone off of the Traceleer and now am just taking Norvasc 5mg, (generic brand to Procardia). This year all my tests came out normal showing that my PH is very much under control; I’m able to walk, run, lift weights, and do it all. I’ve found that keeping my body in shape helps. The only thing I do realize is that I need a lot of sleep, because my body gets run down and I’m more sucseptable to getting sick when I don’t take care of myself.
The Hardest Part of PH is the medical insurance part. Because I don’t work for a corporation and I am self-employed getting insurance and good insurance to cover all the expenses is so difficult. When I was younger I was on my parents insurance and I stay in college purposely as a full time student until 26 so that I was covered. I was also on Cobra for a while and paying over $600 per month on insurances. The struggle has really been financial especially because I’m now on my own.
What does the future hold?
I’ve been extremely fortunate that I am in the 10 percent who responds well to being on 1 medication, but since going off of the Tracleer most recently, I will have to go for tests (EKG, ECHO, PFT’s) every 3 months to make sure that nothing has changed.
I don’t know what the future holds I could get worse with age, or maybe I could stay the same? I’m not sure. All I know is that I never take life for granite and I appreciate and live life to it’s fullest.
I’ve accepted the fact that it’s probably not in my best interest to birth my own children but I’m okay with this. I was always a believer in giving a child a home who needed it. I’ve come to grips with life, and decided that I am the only one who can really make my dreams happen.