Thank you Colleen. I had not seen the two Mayo Clinic web sites. I will take a look.
I had seen a pulmonary doctor in Maryland numerous times and was hospitalized several times with pneumonia. I had asthma and was diagnosed with Emphysema when I was in my mid-30's. My mother was also diagnosed with Emphysema at an early age. Alpha-1 was never mentioned to me before by any doctors. Once we moved to Florida, I was having more trouble breathing so I went to a pulmonologist six weeks ago. After hearing my history of frequent pneumonia and early on set of Emphysema he thought I might have Alpha-1 and so he had me tested for it.

I have an appointment with him next week. They need to do some follow up tests. The nurse had difficulty getting enough blood from the finger pricks to completely fill the circles on the test strip. I got a call from his office telling me that I do have it, All I know at this point is that I tested positive for it and now they need to have further testing. I guess that is to determine the GENOTYPE AND LEVEL etc as Bill mentioned below. I know very little at this point and hope to learn more. Thank you everyone! Nancy Jacobs

@nancyjac, Hi Nancy. Your story reads like mine. Well, sort of. I had the 'asthma' diagnosis for years, and the numerous pneumonias since my 30,s. I am like Bill, I am an MZ carrier with the same low score of 112. For some reason, carriers can get serious lung diseases too. I am so sorry to hear that your test came back positive for it. I pray that it stays at this level or even improves with treatment. Bill is right, if you are positive AND smoke, it will put you on a fast track to death. That is what happened to my mother who was ZZ and smoked. She died at age 58, way too young. That can be a hard diagnosis to take, but, please know that Alpha-1 can affect people differently. Some people have it and don't get sick at all, and some have it where they are sick to some degree, while others get very ill. I see that Bill provided you with the Alpha-1 link. I have been on it myself, it will give you a lot of helpful information. You can sign up for their newsletters and find out if there is a physical support group near you.

@windwalker. I am so sorry about your mother. My mother had been a smoker and had emphysema. We were fortunate that she quit smoking and she didn't get worse. I have no idea if she had Alpha-1. I'm guessing now that she probably did. I'd never heard of it until six weeks ago. I'm surprised that my previous pulmonary doctor who diagnosed me with emphysema over thirty years ago never mentioned the possibility to me. Can carriers who don't smoke get serious lung diseases? This is all so new to me. Thank you for sharing your story with me.

@nancyjac, Yes! Non-smoking carriers of one Alpha-1 gene can and do get serious lung disease. I am a prime example of that. From what I have read on their website; that is not uncommon. They do not fully understand the full extent of Alpha-1. They do not know why carriers can get quite ill with lung diseases. We have one other member in our group who is also a carrier, besides Bill @waterboy.

@colleen. Do you or anyone know how many conditions have been proven or reseached connected to alpha 1. Do drs ever join any of thes discussions. Just wondering