OUR JOURNEYS

Patient story

Diana

Hi! My name is Diana and I have PH. Although my numbers are low (27 at rest), I knew after attending the PH conference this summer and speaking to other PHers I was a member. Funny thing is I felt relieved as I had been going to different cardiac doctors telling them I was feeling worse not better.

Finally I went back to a family doctor who had "guaranteed" that I wouldn't have any heart troubles for five years... advising I could "do anything" as far as exercise was concerned. Little more than a year later I had a pericardectomy, (removal of the pericardium aka "sack" around your heart. Going back to the doctor turned out to be the smartest thing I could have done as he sent me to another cardiologist who diagnosed my pulmonary hypertension through the echo, which if you are reading this as an informed person is not considered a means for PH diagnosis.

As the cardiologist's nurse gave me the diagnosis over the phone (I never heard of pulmonary hypertension before then), I got on the internet and having the blank scared out of me is an understatement!

So, I packed a suitcase and traveled to the conference to "see what I was in store" for. No ticket for the conference, not even sure if I'd be allowed in...but I knew I'd find someone who'd speak to me, even if I had to stand outside the hotel and wait for people to leave!

Thank God I didn't have to go to such extremes! I slept in my car the first night before the conference after driving alone to Houston, Texas from Fayetteville, Arkansas for the first time. (I had to conserve my money as I wanted to get into the seminar if allowed! Remember I had just been told earlier in the week!)

I met some wonderful people and got help with a room for the next 2 nights and learned more than I could have for years on the internet! Found a good , no great doctor, and have traveled twice out of state to see him!

Although it is sad I have been diagnosed with PH, I feel lucky to have gotten diagnosed as soon as I have so maybe I can limit the damage to my heart.

People have said my story is so unbelievable, yet its true. My dr. says I have arterial changes and I will be looking at a lung transplant which scares me, but I will do whatever I have to to give the example to my 4 children..."don't ever give up!" It has taken me all summer and into the fall to come to this conclusion, but it is what I want to leave for a legacy!

God bless you all!

 

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NORD

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.