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My first clue that something might be wrong with me came in the seventh grade and had nothing to do
with my lungs. I was a clean-cut kid who suddenly developed acne that was so severe none of the doctors had ever seen anything like it. They didn't
know how to help me. It turned out years later that I had panniculitis—the skin component of AAT deficiency. Nobody knew. Seventh grade is also when I started smoking, but it didn't seem to cause a problem. I was a distance runner and trained at altitude. I could run until I was just tired of running.
As a teenager, I worked in construction and in other dusty environments, and by the time I was 21, I started to have trouble with my lungs. I got pneumonia very easily. It was always a bad case, and the cough was terrible. I joined the Navy when I was 24 and was seriously ill in boot camp and
"A" school for 9 months. It was like terrible bronchitis, and I was coughing up sputum (we called it "crud"). But in the service, you can't stop going. I think they gave me tetracycline.
On my second ship, a huge old oiler, the real trouble started. We were always at sea, and 45 of us slept in a small room that doubled as the ship's smoking lounge. There was no air circulation. I worked in the boiler room and was exposed daily
to stack gas leaks. The coughing became exhausting, and I kept my shipmates awake all night. But going to medical was risky.
I could have been placed on "medical hold" and discharged. By then I had a wife and 2 children. I had people depending on me. They did treat me-for colds and bronchitis—but I never really got well.
Eventually I was assigned to shore duty. I quit smoking for good. I saw many more doctors and several pulmonologists, and was misdiagnosed several more times. I was losing lung function all along, but I didn't really notice, because as a distance runner my capacity was so high to begin with. When I was on my third ship, I honestly thought I might be dying. I finally saw a specialist who made her diagnosis as soon as she met
me. She didn't tell me anything, though, until she had the blood test results. Then she said I had "a rare form of inherited emphysema that would cause me to die 'years before my time.'" Life expectancy for Alphas then was 42 years. It was 1995, and I was 36. My lung function was at 28%.
I started Prolastin® treatment in October 1996. My lung function rose to 35% almost immediately, and I stopped getting sick so often. My life started to turn around. I could plan things more than 6 months in advance. I found out about the Alpha-1 Association and AlphaNet. I started talking to other Alphas and
learned this isn't a death sentence; Alphas live real lives. The personal contact with people who completely understand you is essential for Alphas. Ongoing support for the Alpha-1 Foundation and for the Association is critical.
I was asked to go to Washington, DC, as an Alpha advocate to address members of Congress on the topic of Medicare reimbursement
for Prolastin®. I also advocate for expanded research into alpha1-antitrypsin (AAT) deficiency. I have relatives facing this disease, and I don't want them to go through dozens of doctors and 12 years of misdiagnoses. The Foundation supports research for the cure for this disease.
It's an amazing thing. I'm 44 years old, and I have been married to the same woman for 16 years. I am retired; I'm active; and I have a life that is absolutely unrecognizable compared with the kid I once was. Thanks to a doctor who knew her medicine and
to Prolastin®, I get to live the way I have always wanted to live.
Remember, these experiences may not be representative of other people with AAT deficiency. Your doctor or healthcare provider is the single best source of information regarding you and your health.
Important Safety Information
Prolastin®, Alpha1-Proteinase Inhibitor (Human) is indicated for chronic replacement therapy of individuals having congenital deficiency of alpha-1 PI (alpha1-antitrypsin deficiency) with clinically demonstrable panacinar emphysema. Weekly Prolastin® therapy has demonstrated a low occurrence of side effects. In clinical studies with Prolastin®, reactions were observed in 1.16% of infusions, the most common events being fever (0.77%), light-headedness (0.19%), and dizziness (0.19%). As with all plasma-derived therapeutics, the potential to transmit infectious agents cannot be totally eliminated. Individuals with selective IgA deficiencies who have known antibody against IgA (anti-IgA antibody) should not receive Prolastin®, since these patients may experience severe reactions, including anaphylaxis, to IgA which may be present.
You are encouraged to report negative side effects of prescription drugs
to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Please click here for Prolastin® full Prescribing Information.
Remember, your doctor or healthcare provider is the single best source of information regarding you and your health. Please consult your doctor or healthcare provider if you have any questions about your health or any of your medications.
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