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Patient story

Aggie Stefanelli

"I had been telling my primary doctor that I just didn't feel right and couldn't really take a nice, clean deep breath. He always said it was anxiety or menopause, so he put me on anti-anxiety meds."

I was diagnosed on June 22, 2009. I'll never forget that day. I had been telling my primary doctor that I just didn't feel right and couldn't really take a nice, clean deep breath. He always said it was anxiety or menopause, so he put me on anti-anxiety meds.

My daughter was a senior in high school and I was very committed to participating with her extracurricular activities. I was exceptionally tired, but figured it was the busy schedule of working full time, attending PTA and Post Prom meetings, dance recitals and competitions. At the same time, my son was applying for law enforcement positions and working towards getting accepted in a policy academy.

I started to notice that I had an enormous amount of swelling in my legs at the end of the day and again my doctor would tell me that I was eating too much salt! At the same time, people started to tell me that my lips looked blue and I felt that my coloring was off. Once again, I went back to my doctor and he finally said that I should have an echocardiogram done. I had no idea what he might be looking for. I figured I might have a blocked artery or something.

I was absolutely shocked to receive a letter in the mail from my test results stating that I had pulmonary hypertension (PH). Having no idea what that was, I, of course, went on-line, only to discover that I basically had 2 to 3 years to live. I was absolutely devastated. I couldn’t imagine not being around for my children and to see them grow into adults, marry, grandchildren, etc.

"I feel that it is important to be your own advocate and insist on having your doctor continue to do tests, as you are the only one who really knows how you feel."

I went to a lung specialist who put me on oxygen immediately and told me to see a pulmonary specialist in Philadelphia. I called and did not get an appointment until September. It was terrible trying to work and carry on as usual and have people look at me with the oxygen attached and ask questions that I didn’t know the answers to.

THANK GOD for the wonderful nurses and doctors at the University of Pennsylvania. I had a catherization done and they could not believe what bad shape I was in. I was put on Flolan immediately and after a week in the hospital came home to an entirely new life. It has been a struggle with a few serious infections in my Hickman line and some unwanted stays in the hospital. I am currently on Veletri (which is an alternative of the Flolan, which requires no ice and making more than one cassette at a time) and only have to use oxygen while sleeping. All in all, I am still able to do whatever I would like to. I did decide to retire a few years earlier than expected.

"I could sit around and say "why me" and have PH really get to me. There days when I feel down, but it is important to look at yourself and say "why not me" and be positive and look at all that you do have in your life and enjoy every moment of it!"

As much as PH is devastating to be diagnosed with, I was glad that they finally found something, as I just knew that my body was not functioning correctly. I feel that it is important to be your own advocate and insist on having your doctor continue to do tests, as you are the only one who really knows how you feel. It has been 3 years since I was diagnosed and I have a much more positive attitude about PH and being able to live a long and very active life.

My son will be 25 soon and is a correction officer for the State of New Jersey. My daughter is an intern at a hair salon and is always trying out new changes on me (which I am glad to have done!!). I feel blessed to have very caring and attentive caregivers: my husband of almost 30 years and two wonderful kids. They’ve had to go through some very emotional days and changes themselves since my diagnosis.

I could sit around and say "why me" and have PH really get to me. There days when I feel down, but it is important to look at yourself and say "why not me" and be positive and look at all that you do have in your life and enjoy every moment of it!

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.