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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.
Medication:
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.
Daily Activates:
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.
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