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SAMPLE -- PH Op-Ed
By Jodi Palmer, November 2006
It’s been four years this month since my daughter Christen died of a miserable disease, pulmonary hypertension. I could tell you that she basically died because her heart failed after the blood vessels in her lungs hardened and she couldn’t breathe. Her heart had to work so hard to get oxygen that it gave out. I could tell you how she faced this illness with a grace and strength that I will admire the rest of my life. She was a truly special person.
She was diagnosed during her senior year in college. Doctors begged her to quit school and come home and she refused. “I’m almost done, Mom, I’m not giving up now,“ she said in the same determined way and with that same assertive voice she always used to make sure I knew that protest was futile. Christen’s determination (some people would say hard-headedness) could be frustrating to deal with at times, but it certainly served her well in fighting this disease that, sadly, was so much more determined than she was. It robbed her of her life breath by breath.
But she fought it as long as she could. She graduated from college, came home and married her high school boyfriend. She used her degree in criminal justice and worked at a local halfway house for convicted felons trying to work their way back into society. Law school was no longer an option because of PH. After a year and half she then went through the TAP program and became a teacher. She died three months after getting her first teaching job, two years after her diagnosis. As she lay dying in her hospital bed at Vanderbilt University Medical Center, she told me that she had a good life. She had done everything she wanted to do. She was 22 years old.
But you know, the truth is, she didn’t do everything I wish she could have done. How could she in such a short period of time? I wish she had seen her sister go to the prom, graduate from high school and go to college. I wish she was here to chide her brothers about their grades in high school. I just wish she was here.
And all I can do to make some sense of life is to write about her illness when I have the opportunity, so that perhaps I can keep one of you from the devastation of this disease. There is on-going research, and progress is being made, but the disease remains something of a mystery. As Christen’s doctor told us of the medicine she was taking that prolonged her life: “We don’t know why it works, and we don’t know why it stops working.”
November is Pulmonary Hypertension Month. The goal is awareness of this illness because early diagnosis is crucial. If Christen had been diagnosed earlier instead of listening to a doctor who told her that she was short of breath only because she had lost so much weight, she might still be alive.
There are two types of pulmonary hypertension: primary and secondary. Simply put, primary means there is no known cause for the disease, while secondary means there is a known cause. Among those causes are breathing disorders such as emphysema and bronchitis. Primary Pulmonary Hypertension, which is extremely rare and is the kind Christen had, is probably caused by many unknown sources. It occurs in about two people per million population per year. Symptoms for both, according to the Pulmonary Hypertension Association Web site (phassociation.org), include shortness of breath with minimal exertion, fatigue, chest pain, dizzy spells and fainting. There is no cure, but the illness can be treated by a variety of drugs and sometimes, if you’re fortunate enough to get one, by a heart and lung transplant.
If you have any of these symptoms, please don’t ignore them. See a doctor. Go to the Web site. Remember my Christen.
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