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Birth Date Gender Heritage Nationality Alpha type Alpha level Alpha gene Last DLCO Diagnosed Treatment Siblings |
Jennifer Longstaff I live in Colorado. My career is in Software Marketing. My favorite color is Green. I enjoy cycling and playing the piano. I have cats for pets. My favorite quote is, "Wherever you go, there you are."
12/13/04 I've been an athlete all my life and have never smoked. So it seemed so unfair when I was diagnosed with emphysema - a disease that hinders my ability to be active, and also one that I thought only smokers get. It was also a shock to find out I had this "smoker's disease." It was due to Alpha-1 Deficiency. I sought diagnosis after wondering why I became so short of breath when at altitude. I live at 5400 ft (Boulder, Colorado) which I can handle. But when visiting mountain towns (9000 ft and higher), I became dysfunctionally out of breath and couldn't even sleep due to all the gasping for breath! After a few misdiagnoses (docs guessed at allergies, high-altitude illness, exercise-induced asthma...) I found a sports medicine pulmonologist who realized that someone as active as I am must have something more serious going on. He zeroed in on emphysema and Alpha-1 after about 3 weeks of various tests. The interesting thing is, even after he found definite proof of Alpha-1, he still couldn't believe it. He thought, as do many pulmonologists, that people won't develop emphysema, even Alpha-1 emphysema, if they have never smoked or been exposed to smoke or hazardous environmental fumes. I am proof that people with the most healthy lifestyle can still be stricken with a debilitating condition thanks to Alpha-1 deficiency. After my initial shock and anger, I was able to step back and assess what this diagnosis really meant for me. I realized that I still am able to be active, I just need to rest more often than others. I embraced bicycling as my new activity of choice. Bicycling works well for those who are lung-impaired, because we can select low gearing that still lets us ride at a level we can handle. I decided to do as much as I can while I still have the lungs for it -- given that none of us know what the future will bring. So I trained for 2 years and rode my bicycle across the country in the summer of 2004 (as part of the American Lung Association's Big Ride). It took 7 weeks I rode an average of 83 miles per day - over hills and through heat and headwind! I may have been the slowest rider on the trip, and I needed to sleep for 10 hours every night to recover - but I did it!! With that accomplishment behind me, I have a new attitude about "being ill with lung disease." I think we can all strive for goals that may seem out of reach. Don't give up everyone - stay healthy and push yourself every day. And foremost, enjoy every day that you have! |
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