I Have Alpha What?
"You have Alpha-1 Antitrypsin Deficiency."
Those were the words that I heard when I was diagnosed in June of 2010.
My initial thoughts
Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition – it is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age.1
I was sitting in the doctor's office with my eleven-year-old son when she told me those words. She told me I'd have to have a port put in my chest and I'd have to have liquid IVs put into that port once a week. What she described was what I could picture of a cancer patient - getting things put in their chest for treatments, etc.
I was thinking in my head, 'Is this something I need to worry about? Should I cry? Am I scared?' I didn't know what to do but I knew I couldn't act scared in front of my eleven-year-old son. She told me that she would send me to an Alpha-1 specialist in Iowa City.
An uncertain future
I had one month before my appointment. In the meantime, I came home, told my husband, and read up all I could on Alpha-1. I was scared and didn't know what the future would hold for my family and me. It was terrifying to read some stories and hear the life expectancy for Alpha-1 patients. Of course, I learned later on in my Alpha-1 journey that we are all different and if we try our best to stay healthy, keep moving and take care of ourselves, there is no expiration date stamped on us.
At the time of my diagnosis, I had three kids aged 21, 18, and 11. I had one son who had graduated from high school and my daughter was graduating that year. The first goal I made was that I was going to live to see my 11-year-old graduate from high school. I'm so happy I got to see him walk down the aisle and graduate in 2017.
I had many more goals which included seeing my kids marry their best friends and seeing my grandkids born. My two oldest have gotten married and I have 5 grandchildren so far. They sure have helped keep me going. I look forward to seeing my youngest marry in the future and also look forward to watching my grandchildren grow up, get married, and have children of their own.
Keep records and keep moving
I made it to Iowa City for my first appointment with the Alpha-1 specialist. I had many tests and learned more from him and the Alpha-1 Community.
I went through many emotions after being diagnosed - from sadness to anger to loss. I am better today and am stronger than I have ever been since being diagnosed. I owe that all to my family, friends, and the Alpha-1/COPD family that I have met along the way.
If I could offer any advice to others from what I have learned, it would be to keep records of all your appointments and test results. Accept help from others when needed but keep moving, even if it’s doing a couple of minutes of something, stopping to rest, and then doing a little more. It is so important to move. I wish I would have learned that early on. Enjoy life and don’t put off doing things for later, do them now.
How has your experience been navigating the healthcare system as someone with COPD?