It's a Genetic Thing: Alpha 1
In 1989, my youngest sister through labs was told she has low Antitrypsin counts and perhaps she and siblings should be tested for Alpha 1 Antitrypsin Deficiency. We had family doctors test us even though they themselves had never heard of Alpha1. The results: Yes, you do have this, but you're healthy so keep doing what your doing in life. My older sister and I grew up working at chicken farms, and still worked there when diagnosed.
She was a smoker. Six months after diagnosis, my older sister, age 27, had a collapsed lung from pneumonia, was diagnosed with stage 4 COPD and our journey into Alpha 1 began. It took 10 excruciating years for her to fall to 10% lung function and Stage 4 COPD the symptomatic lung disease from Alpha 1. I was her caregiver, watching her was scary and a good look at my future. In 2002, she finally got her lung transplant.
Fast forward, 2006, I was diagnosed with Stage 3 COPD caused from my Alpha 1. At age 38, I became a disabled single mother of three. I was beside myself. Although taking care of my sister had prepared me, I never imagined how terrifying not being able to breathe really was. You just don't know until you have walked a day in those shoes. Now, 2016, I am stage 4, on 4 liters constant flow oxygen, and working towards my own lung transplant. At 27% lung function, I am an active support group leader for the State of Maine and an Advocate for Alpha 1 Awareness and COPD . It keeps my days busy and my mind focused. Pulmonary Rehab and exercise a must. So if you are young, and have been diagnosed with COPD be sure you are tested for Alpha 1. There is therapy to slow the progression of your lung disease. For more information, go to www.alpha1.org.
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