OUR JOURNEYS

Patient story

Betty Lait, Congressman Phil English and Merle ReesemanBetty Lait

Betty is pictured here on the left next to Congressman Phil English (center) and Merle Reeseman (right)

It all started on New Year's Eve, 1999.

What a way to spend this night--sick in bed with what I thought was the flu!!!! New Year's Day found me in the emergency room of a local hospital. After blood work, I was told I had pneumonia. They gave me a shot and some pills to hold me until I could see my PCP the next day. Since I was so sick, he decided to admit me to the hospital. A pulmonologist was called in and he told me he would not look at my x-rays as he knew I had emphysema! He said this because I was a volunteer in a battered women's shelter and inhaled maybe three packs of cigarettes a week. My PCP said I had an enlarged heart and to go home and not worry about it as everyone gets one!! I said okay and went home and changed all my doctors. My heart was beating 180 beats a minute by then.

Three months later: my new pulmonologist put me into another hospital and called in a cardiologist. They did all kinds of testing and never did find emphysema! After 2 echo's, they sent me to Alleghany General Hospital in Pittsburgh, Pa. for diagnosis-----thus primary pulmonary hypertension. I was given 1 to 3 years and so far I have lived 7 years with the proper care and medicines (3) for PH. I take Tracleer, Revatio and Ventavis. They are working as I have gotten no worse or no better in the past 6 months.

I wanted to learn all I could about this dreaded disease so I found NIH and read all I could and then I found PHA and two other people with PPH. I was no longer alone after 3 years.

I started a support group in my home in Western Pa. with the help of Accredo out of Warrendale, Pa. and also the American Respiratory Alliance, who has since left us. Along with Accredo now we have another sponsor that is Health Care Solutions of Sharon, Pa. Our group has increased from 3 to about 15 patients and after 4 years we are still going strong. I am very pleased and hope that it will continue to grow.

We have had two members of congress co-sponsor the HR 1316 bill. We have raised money for awareness and I have done an hour radio show for the past four years on a local radio station and it will be on going. People have called in and our speakers are most knowledgeable about the disease and PHA.

Awareness is my main goal. I am going to keep going as a local voice for awareness and research, as long as I have a voice. My vision for the future is a cure so that others will not have to suffer the way I have.

 

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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.