OUR JOURNEYS

Patient story

Donna Rennie

My name is Donna I started to see a pulmonolgist in 2000, when he had sent me for a battery of tests for shortness of breath and fatigue. I also had sleep studies and a PFT and was hospitalized several times because my o2 sats were so low. I was diagnosed with sleep apnea, COPD and was prescribed a C-PAP machine and several inhalers. My condition was worsening; I couldn’t walk to the end of my driveway without feeling dizziness like I was going to pass out and couldn’t breathe. My pulmonologist decided to send me to a big hospital in Boston where they performed all sorts of tests, like arterial blood gasses while riding a stationary bike and six minute walk tests. After seeing this specialist several times, my regular pulmonologist ask me to sign a consent release to get my results. I signed these consent papers at least six times with no response. Well, I came to find out they lost my records. My pulmonologist kept telling me to go back and I responded with send me to a different hospital which he wouldn’t. So finally I went back in June and saw a different pulmonology specialist and he set me up for a right heart catheterization and bubble echos before that. After the catheterization I was given the diagnosis that I have primary pulmonary hypertension. Now it is 2007 and I’m wondering if I have in fact had this disease for seven years. I’m guessing that yes, I have. You can imagine how angry I am about this.

I have a new pulmonologist now and he has put me on Tracleer. I have researched PPH online and now know how serious this disease is, but being newly diagnosed I feel like my life is falling apart. I can talk to my husband about it, but I don’t. I don’t want him to feel like I’m having a pity party. I am not. I’m just angry about this whole situation. If anyone out there can give some helpful advice I am willing to listen.

Thank You In Advance,
Donna Rennie
Newly diagnosed pph patient

 

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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.