Patient story

Donna IceDonna Ice

From my blog:

As I write this, I'm sitting at my living room window, watching the leaves flutter gently on the Australian bottle tree in my front yard, bees buzzing the honeysuckle plants, and the sunlight playing cat and mouse tricks with the lantana. I think about how quickly this year has passed, unable to comprehend that my children are already three months into the school year and that winter break is only a few weeks away.

Two years ago, I remember sitting at this same window gazing outside and wondering why I couldn't walk down the block to the mailbox without feeling as if an elephant was planted on my chest, forcing me to gasp for a simple breath. Just months earlier I was doing 45 minute workouts at the YMCA four times per week, and within weeks I couldn't walk a half a city block.

Two years ago, I sat in my family practitioner's office, begging for answers as to why my chest hurt so bad just because I had walked from my car into his office. I remember lying on the exam table of the hospital while they ran numerous tests to determine if I had suffered a heart attack. I remember thinking that I was so stupid for not taking better care of myself when heart disease and diabetes are as much of a part of my family genetics as are dark skin and slanted eyes.

For months I struggled to catch my breath, with fatigue, and with crushing chest pain. Still, I gamely went about my duties as a wife, mother, church volunteer, and friend. My family practitioner prescribed asthma medication, told me that there was nothing else wrong with me, but recommended I consult a pulmonologist and perhaps a hematologist (since my blood tests seem to indicate some "oddities") just to be safe.

I remember mentioning to my rheumatologist, as he was administering cortisone shots in my wrists to help with my carpal tunnel syndrome, that I was having trouble breathing without pain and no one seemed to know what was wrong with me. He asked me to describe all of my symptoms, and he dutifully noted them all in my chart, despite it not being part of his treatment. Solemnly, he took out a piece of paper, wrote something down, folded the paper, and handed it to me. He told me not to look at it but to keep it tucked away for future reference. "I have an idea of what might be wrong with you, but I hope I'm wrong. Consult the pulmonologist, have him run the tests, and then when he's made his diagnosis, look at this paper and see what it says."

Six months later, after two heart catheterizations, two echocardiograms, and a full lung capacity test, I looked at that little slip of paper. It said "Pulmonary Hypertension" -- the same diagnosis I had received from my pulmonologist and the cardiologist. I sobbed.

Sixteen months have passed since I was diagnosed with ideopathic pulmonary arterial hypertension. It is a rare disease, affecting approximately 100,000 worldwide. It is progressive and potentially life-threatening. The arteries that feed blood from the heart to the lungs become compressed, restricting blood flow and oxygen distribution to the lungs. The blood backs up to the right side of the heart, causing it to become enlarged. Death occurs when the patient suffers right heart failure. There is no cure for PH, only treatment. Luckily for me, treatment options number in the handful; 10 years ago, the only option was death.

Additionally, I was diagnosed with Protein S Deficiency, an even more rare condition. A lack of Protein S means that my blood clots much too easily. Until I became "therapeutic" on anticoagulants, I was required to go to the hospital weekly to have phlebotomies, or blood-letting sessions in order to help thin my blood. After about six weeks of this, I no longer needed to go for my weekly "leeching" sessions.

Today, I am stable on my PH medications. In addition to an anticoagulant, I take a vasodilator to help "open up" my arteries, an endothelin receptor antagonist (endothelin is a natural chemical in the body that tightens (constricts) blood vessels and increases inflammation), a diuretic, and potassium. I also use an asthma inhaler as needed, a necessary component in my purse these mild winter days when our air is filled with pollutants.

Although I have a handicapped tag on my car, I refuse to let this disease define who and what I am. I continue to live my life as I did before my diagnosis -- no, that's not quite true. Since my diagnosis, a few things have changed. I pray more, I laugh more, I sing more, and I write more. I hug my kids more, kiss my husband more, and tell my friends I love them more often. Some days I spend sitting in bed, conserving the paltry energy I have that given day, and other days I'm in my fifth-grader's class helping 10-year-olds master the intricacies of persuasive writing.

I share my story today because it's what writers do, they write and share. It's what I need to do because November is Pulmonary Hypertension Awareness month, and you all need to know that if it could happen to me, that one in a million, it could happen to someone you love. And I share it because today I woke up, breathing and alive, and I am so very grateful that I did.

If you'd like to know how you can help, please visit The Pulmonary Hypertension Association. I thank you in advance for your support.

***Because of this posting on my blog, one of my readers from England donated $100 to the PHA.


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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.