Carole

Birth Date
10/4/53

Gender
female

Heritage
German
Scottish/Irish

Nationality
American

Alpha type
lung

Alpha level
22mg/dl

Alpha gene
ZZ

Diagnosed
February 1999

Last FEV1
before tx: 20%

Treatment
bbefore tx:
inhalers, Prolastin,
oxygen

Surgery
Double Lung Transplant

Transplant
8/20/03

TX Hospital
Methodist, Indianapolis, IN

Siblings
2

Carole Gibson

cg0553@prodigy.net

I live in Indiana.

I am disabled from a Clerical job with a plastics company.

My favorite color is Light Pink

I am completely addicted to the Internet.

7/10/2004 My Alpha-1 story is the typical lung-affected Alpha story. I began noticing unusual shortness of breath in my late 30s but blamed it on smoking. I would continually quit smoking and start again. As my S.O.B. got worse, I blamed it on turning 40 and still smoking. Again, I would constantly quit but start up once more. When I was 42 I got pneumonia and was treated with antibiotics and even had a chest xray and and a pft. That was also the end of my smoking forever. I was not diagnosed with Alpha-1 and my doctor didn't seem concerned that I kept getting worse instead of better. I remember asking him on at least two different occasions if I should see a specialist, but he told me there was no need. It's funny how we accept the answers we want to hear. I continued to struggle with my breathing and started to have horrible panic attacks brought on by the shortness of breath. Still, no action from my doctor except to prescribe more inhalers and small dosage Valium. I was also missing a lot of work because I just couldn't get up and go some days. At the age of 45 my employer switched insurance carriers and I was forced to find a new doctor. I was diagnosed within two months after finding another doctor. That was two years ago and I'm now receiving good medical attention, I'm on 02, on disability, and just got listed for a double lung transplant at Methodist Hospital in Indianapolis. I will never, ever again accept the "don't worry about a thing" answer from anyone. I think that is perhaps the biggest lesson all of us Alphas have learned; we must be our own advocates to maintain our health and get the proper care we need and deserve. This website is a wonderful place to keep in touch with each other and compare stories - it just might help to save a life.

Thanks for listening.

Carol

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