“The doctors didn’t say it was asthma. They didn’t say it was anything specific. They just had her on puffers. There was just too much stress on her body and my sister died.”
My oldest sister was 59 when she died from what doctors referred to as “pulmonary complications”.
“They never checked for Alpha-1.”
Granted she was a smoker. But how different her life might have looked if she tested positive for the rare blood disorder.
Would she have quit smoking? Would she have received life-preserving treatment like my twin sister?
One can only wonder in retrospect.
“In 2012, while my twin sister was skiing in Whistler, she started having trouble breathing as she came down a run. They ended up taking her to the hospital.”
“She has fortunate enough to see a cardiologist who knew about Alpha-1 and suggested she get her lungs checked out.”
I was also advised to get tested, and it turns out we both have Alpha-1. So do our parents.
We were simply born from two parents who must have got it from their parents, who got it from theirs.
“So I know that it is no fault of my own, it’s just a disease where the lungs get weaker and weaker and weaker. I’ll lose my lung capacity and the ability to push air out. When I get to that point hopefully I’ll be able to get the treatment.”
“… it’s just a disease where the lungs get weaker and weaker and weaker.”
For now, I do my best to stay active and keep my lungs functioning as best they can.
“But as I get older I start to think about it a bit more. I see myself being more winded when I’m doing physical excursion. I’m thinking about what it means for me down the road as it gets worse and worse, because there’s no cure for it. There is a treatment that can sustain it for a period of time but as you age it just gets worse and…