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What Info Do I Need From My Pulmonologist?
I recently got a new pulmonologist and he did all kinds of testing. I am positive for Alpha 1 and I have COPD. However, we talked so much about the Alpha 1, that my doctor did not tell me any of my numbers (Lung function, capacity). I honestly don't know what are the important things to know (2 prior doctors didn't think anything was wrong with me) Could someone give me ideas of questions to ask my new doctor on our next visit? What are the important things I need to know? I've already… read more
Yes. Since Alpha 1 is a lack of a protein in your blood, the treatment is augmentation of that protein. I get infusions every week via IV.
You need to know what your Alpha-1 specific diagnosis is, and which of the genetic matches you have: ZZ, MM, MZ, etc. Ask what medications he will prescribe for you and what each one is for. Do you need supplemental O2, why or why not? What can you do to change your lifestyle to make your life better. I really suggest you go to this website: www.alpha-1.org This website has a tremendous amount of information that will be very useful to you. There's also a hotline you can call and talk with a person who has Alpha-1.
Jean
It's mostly covered by my insurance. I pay $50 a month
alpha 1 is a genetic disorder than can cause lung disease or liver disease. I think anyone who has COPd do should be tested for it. There is a treatment that can slow progression of lung disease, if it's caused by Alpha 1.
Do you have to pay for the augmentation therapy?
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