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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Donna Head Transcript

Jun 13, 2017

Pulmonary hypertension patient Donna Head was diagnosed with PH before any treatments were available. Donna, a former nurse, discusses how living with an invisible illness has been a challenge and how she’s contributing to a cure.

My name is Donna Head, and I'm from Stapleton, Alabama.

In 1988, my son was born in April, and three months later, we went to Hawaii to see my brother, and we were climbing up Diamond Head, and I noticed that I couldn't do it. My sister in law just went right on up. We got up to the steps at the top of Diamond Head, and I looked up at my brother, and I said, "I can't do this."

I was a nurse, and I went back home. I went to work, and just progressively my heart would race. I didn't get short of breath, but my heart would race a lot, and then I passed out at work one day, and nurses, doctors don't take very seriously that they're sick. You have to just be about dead to get help. Well, I was just at that point. They sent me to a cardiologist, and he put me on a treadmill, and I went three minutes, and my heart rate was at 180 beats per minute, and they put me in the hospital the next morning for a right heart catheterization.

They waited till the next day to tell me. That's what really bothers me. They told me the next morning, and he sat on the side of my bed, and he said, "Donna," he said, "You've got primary pulmonary hypertension." I said, "Okay, well let's fix it." He said, "We can't. You're going to live two years."

So I went home and still thought he was joking. I didn't think anything about it. There were no medicines back then for pulmonary hypertension, so they sent me to Birmingham for a heart transplant evaluation, and we went from there. Few years later, finally some medicines started coming out, and that was good. I think it really helped in a way. There was not a big transition. I've gradually worsened over the years, so we've added medicines, but right now, my pressures are pretty close to normal. I lead a very average, normal life. I really do and have for years.

I started to get sick in '88. I was diagnosed in '91, and the transplants weren't lasting a long time then. The most you could get out of a heart/lung transplant back then was five years, and I did not want to just live five years. I wanted to live a lifetime.

I have family that still doesn’t believe I'm sick because I didn't die when they told me I would. "You're not sick. You're not sick." And then I have family that really takes it in and believes it, and they're real good about it. When I was first diagnosed, I lived in a small town, and I would go to the grocery store, and people would look at me strange. It was like, I don't have anything catching, people. You can't catch this from me. But most the time, people just look at me like I'm normal, because I don't look sick, and I'm lucky. I don't have anything else wrong with me. I tend to get overly medicated really fast. I don't have to take a lot of pulmonary hypertension medicines for them to work.

I lead two support groups, one in Mobile, Alabama and one in Pensacola, Florida. For the past three years, my Mobile group and I, we put on a race, a 5K race, to raise money for pulmonary hypertension, and it's gone really well. I just want the whole world to know about pulmonary hypertension because if everybody knows about it, something will finally get done, and they'll find a cure.

I'm Donna Head, and I'm aware that I'm rare, and I love it. 

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