 To
try and make a long story short, I first became aware of
a "problem" about 15 years ago. I was fainting
when I would try to run. So, I stopped running.
In 1992, after a routine EKG looked alarming, I was sent
immediately to a cardiologist. He ran the routine
tests including a heart cath and I was told I had primary
pulmonary hypertension. I was never told this was
a serious lung disease or what the ramifications of the
disease were. In fact, my husband and I assumed I
had a bad heart. The cardio tried me on cardizem,
which lowered my systemic blood pressure severely and as
a result I was non-functional. He stopped the cardizem
and did yearly echoes to monitor the PPH. My pressures
stayed in the same range for 10 years now, but my symptoms
began to progress into effecting everyday activities.
That
is when I met all of you. Around 9/01, I became active on
PHfriends and PHCentral and heard the message loud and clear---"see
a PH specialist." Because of my now infamous HMO, I saw 2
pulmonologists who both said loud and clear "see a PH specialist
NOW!" They were quite kind and fought my HMO for 2 more
months until I got approval to see Dr. Palevsky at University of
Pennsylvania. I just saw him for the first time in 2/02. He
is hoping to get me on Tracleer and to avoid Flolan at this point.
Right now, my HMO is not budging and is questioning the need for
Tracleer.
And
that is where I am today. I work part-time as a Social Worker, 3
days per week. (Another reason the PH specialist wanted to avoid
Flolan.) I am still able to do all the housework, but notice an
alarming change in climbing the stairs, dusting, vacuuming, carrying the
laundry basket and so forth. Unfortunately, my favorite thing in
life is exercise and fitness. But I am trying my best not to be
discouraged and to stay as active as I can. Thankfully, my PH
doctor is very supportive of this philosophy. I am married 15
years and my husband is very understanding and supportive. So, I
am blessed in many ways. My biggest struggle is constantly
fighting and delays with the HMO. I want to be able to treat this
disease and apparently the HMO has other things in mind. Thank you all for being my
PHfriends. I have learned so much from all of
you and hope to help others the way you have helped and guided me.
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