OUR JOURNEYS

Patient story

Jeannette Morrill

Jeanette MorrillDéjà vu!!

by Jeannette Morrill

I woke up on October 9, 2010, and had to go straight back to bed. I just didn’t feel right. I was sweating, and had developed chest pain. My son, Ian, told me I was flushed and said, “We’re going to the hospital.” I was frustrated. I hadn’t been admitted to the hospital in more than 10 months. But I was scared, and I knew Ian was right.

The Emergency Room doctor felt I should go to a larger hospital, where physicians would know more about dealing with pulmonary hypertension and my treprostinil (Remodulin™) intravenous pump. I wanted to go to Maine Medical Center, several hours away in Portland, to see my PH specialist. The nurse agreed — and when my husband David arrived, he was adamant. So off I went.

I was seen by a cardiologist, who ordered a cardiac catheterization for Monday. I would be in the hospital over the weekend. Why was this happening to me now? I had support group and physician meetings and a trip to Rochester, N.Y., scheduled in just days. I did not have time to be sick! But I would soon find out why my life had taken this turn at just this time.

On Sunday, one of the nurses asked if I would see a young woman on the floor who had just been diagnosed with PH the day before. Even though my pain had become more intense, I told her absolutely. I could not even get up from bed, so I asked if she could come to me. And so I met Braden Buehler.

I saw myself in Braden — young, vibrant, full of life, a beautiful person. Seeing her troubled face, I remembered just how I had felt 35 years ago when I was first told I had PH and had only two years to live. Like me, Braden had become increasingly short of breath when doing simple tasks. She had just had her first baby. She told herself she needed to get back in shape, not work as hard, get more sleep. Then she fainted, was given an ECHO, and was sent straight to the hospital. I remembered making the same excuses, and how terrible it was at first to discover what was wrong.

I wondered, what should I say? The nurses had already told her some of my story to comfort her after she had read some of the old, horrible PH information on the Internet in her hospital room. It was difficult, while we talked, not to remember those scary times I have had. But I could tell her that I had been diagnosed at 23 and was now 58. I could see how much hope that gave her. We talked for a long time. Her husband met my own husband, David. He was able to share encouraging stories about taking care of someone with PH. When they left my room, they were smiling again.

Braden had one more test to take before she could go home. She had to go back to the cath lab and see if she was a responder to calcium channel blockers. And, she was! Her pulmonary pressure went back to normal during the test. When she told me, I was so thrilled for her. After reflecting on the news, I realized PH diagnosis and prognosis is changing for patients diagnosed early and who receive appropriate treatment.

Under the care of my own specialist, Dr. Joel Wirth, Braden is being treated with 120mg of nifedipine (Nifedical XL™). By December, her pressures dropped from the 80s back to normal range. How fantastic is that! She has her own graphic design business and is still working hard, and now she can keep up with her little boy.

And now, I have found a very dear friend in Braden. We talk often, and we have a very special bond. It is amazing to me that I should be hospitalized at this very time; as my own cath eventually showed, it was only rheumatoid arthritis in my chest wall, mimicking cardiac pain. I can’t explain it. It was meant to be.

Braden’s journey has shown me a new story is being written for PH. It is her chapter, but it gives me so much strength. Her prognosis is so promising! I see so many similarities, and hope for many differences. She will have treatment options I did not have. She will have access to support networks that did not exist in 1976. And she will have me.

My path has been so hard at times, but I know now that my journey matters. I have made a difference! My journey now is helping other patients.

 

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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.