‘I’m so happy I didn’t give up all those years ago.’

Donna Head, 59, first noticed her pulmonary hypertension (PH) symptoms in 1988 on a visit to Hawaii. Today, she lives along the Alabama coast, where she loves to read, crochet, cook and work with her church. This article originally appeared in Pathlight, the Pulmonary Hypertension Association’s quarterly member magazine. The December 2020 issue launched PHA’s 30th anniversary with stories of the association’s early years, journeys of long-time survivors like Donna, and advances in PH research. Read on for more of Donna’s story.

By Donna Head

While visiting Diamond Head volcano, I had trouble going up the walkway. My brother helped me get up, huffing and puffing. I finally got to see the view.

Over the next three years, I had problems with my heart racing. At the time, I was a nurse in a doctor’s office, where everyone thought my racing heart was stress-related. I went to a pulmonary doctor, who thought I had asthma and put me on inhalers.

A few months later I passed out at work. I went to a cardiologist on a Wednesday morning that I will never forget. They put me on a treadmill, and my heart rate rose to 180 beats per minute in three minutes. They performed a right heart catheterization the next morning and admitted me to the hospital.

Later that day, my best friend and brother came by and brought thoughtful gifts. The next morning, after a pulmonary function test, my doctor said I had primary pulmonary hypertension, now known as pulmonary arterial hypertension (PAH). My mom was crying, and the doctor was crying as he said, “You are dying, and it won’t be much longer.”

Reality check

My first question was, “I can’t have any more children?” I then asked, “How do we fix it?” The doctor said there were no medications at that time, but a heart/ lung transplant would save me. We went home, and it didn’t hit me. Five days later a man from my church came by, and the look on his face told it all. I finally cried.

The next week, I got an appointment at UAB Hospital in Birmingham, Alabama. They scheduled a heart/lung transplant evaluation for January 1992.

The next morning, I checked into the hospital and was admitted for a rough week of transplant evaluation.

On the last day, a right heart catheterization showed my pulmonary arterial pressures had dropped in half. I no longer needed an immediate transplant.

Finding love
I lived life to the fullest and kept working. In June 1992, I met a wonderful man, Milton, and we started dating. I had trouble getting up my nerve to tell him about my diagnosis. One night, after a movie, I finally told him that I had a rare heart condition.

I said the doctors thought I had about a year to live. He held my face in his hands and said that we would get through it.

He said he would make that the best year of my life. We went dancing, sat on the porch swing, talked for hours, went to concerts and walked. He even went to Birmingham with me to see my doctor.

On Dec. 23, Milton proposed. I jumped in his arms and said “yes.” My son Nathan had helped him pick out the ring and kept the secret.

The next morning, I asked Milton whether he was sure because the PH might not might give us much time together. He said he would take a week if that’s all he could get with me. One year later, we were married. We still are.

Moving forward
My doctors have tried every new medication that comes out for PH. I found Dr. Ben DeBoisblanc, whose personality perfectly matches mine. He has saved my life more times than I can count.

I started Tracleer as soon as it came out. Next, we tried subcutaneous remodulin. I tried Viagra when it was in trial stage. I was put on Tyvaso, then Orenitram, then Uptravi.

One of my nurses suggested that I start a Pulmonary Hypertension Association (PHA) support group. After I found a spot to meet, the nurses sent fliers to their PH patients, and we had our first meeting. It was wonderful to meet other PH patients.

I am lucky to have stayed off IV medications 30 years after diagnosis. I recently went back on Tyvaso and need oxygen all the time. I have been so blessed, and PHA has helped me so much over the years.

Looking back
When I was diagnosed, there were no medications for PH. My doctors wanted a right heart catheterization every six weeks. They wanted to know if the calcium channel blockers stopped working so I could have a heart/lung transplant.

This went on for about eight years. There wasn’t much I couldn’t do in the first 10 years of PH. Eventually, my doctor suggested that I quit working to live longer.

That was rough because I wanted to be a nurse my whole life. But my son will tell you it was worth it in the long run to have me home with him. He played drums in the high school band, and I worked in the concession stands every week. I saw him graduate from high school and start college at the University of Alabama.

A full life
About six months ago, I was having trouble getting from the shower to the bed. When I went to the doctor, my right lung was full of fluid. I was in right heart failure.

I am now on oxygen 24/7 awaiting insurance to approve a medication. Although I have stayed off IV therapy, I will do whatever it takes to get better. I want to live, see my son get married and have grand babies.

My husband and I are still very much in love, and we have two Boston terriers. I am so happy I didn’t give up all those years ago. I have had a very full good life.

To read more first-person stories from people with PH, caregivers, families and friends, visit PHA’s Right Heart Blog.

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Donna Head