I'm Aware That I'm Rare: Donna Head

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.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at phaware.global/podcast. Learn more about pulmonary hypertension at phaware.global. #phaware

Find this story helpful? Share it with someone you care about.

Related to Pulmonary Hypertension

ph aware banner

I'm Aware That I'm Rare: Tilman Humpl, MD

Dr. Tilman Humpl is the Director of the Pulmonary Hypertension Service at the Hospital for Sick Children in Toronto, which is part of the Pediatric Pulmonary Hypertension Network (PPHNet).  One focus of Dr. Humpl’s clinical work is the management of children on a ventricular assist device. As the Director of the Pulmonary Hypertension Service at [...]
ph aware banner

I'm Aware That I'm Rare: Demos Papamatheakis, MD

Demosthenes (Demos) Papamatheakis, MD is a board-certified pulmonologist and intensive care specialist from UC San Diego. Dr. Papamatheakis participates in multiple clinical trials looking at new medications geared toward pulmonary arterial hypertension treatment. As an assistant professor of medicine, Dr. Papamatheakis has a strong interest in medical education and is an active participant in training [...]
The Bride from Kill Bill.

What a Quentin Tarantino Character Taught Me About Life With Pulmonary Hypertension

I was flipping through TV channels the other evening and came across one of the most motivational parts of “Kill Bill: Volume 1.” If you are a Quentin Tarantino fan, you may already know what scene I am referring to. The Bride has woken up from a coma-like state, and is struggling to regain movement. She stares [...]
cherry blossom tree

What a Blossom Tree Blooming After an Ice Storm Taught Me About Illness

I was diagnosed with pulmonary hypertension over three years ago, towards the end of a cold December. It was only a couple of days after my diagnosis that a giant winter storm hit the town I live in. Prior to this, winter storms had always signified something special to me. I was born during a winter [...]