Who all has MAC and Alpha-1 Antitrypsin Deficiency?

@hammerheadham, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
- Alpha-1 Antitrypsin Deficiency https://my.clevelandclinic.org/health/diseases/21175-alpha-1-antitrypsin-deficiency

I'll be interested to hear if augmentation therapy is right for you.

I am considered a carrier also but from what I have read, you can still get sick. My lung doctor says something about missing a protein that protects your lungs. Either the liver does not make it or an abnormal shape that prevents it from getting to the lungs. There is a lot to alpha-1 it can get complicated. When I go back May 2nd. to see him, he is suppose to do a test that checks everything about my immune system. Over all I think my immune system works good because I typically never get sick and I don't take vaccines.

Thank you for your response. My pulmonologist simply had his assistant call me with that information, then came the influenza and prescription. By the time I saw him the MAC culture had come back positive and the focus was all on whether or not to start the Big 3. I this in the Bronchiectasis & NTM360 newsletter— BLOG POST: Is Alpha-1 Related to Your Bronchiectasis? and started investigating from there, finding as you did that carriers can get sick. It gives a whole different perspective on my early childhood cough (diagnosed as asthma), possible effects of my dad's chain smoking, and where I am now. Except for this life-long cough/lung thing, I too, fortunately tend to not get sick.
Anna

Hi Colleen, I am trying to find another mentor that I saw when I first found this site. I do not remember her name but she said in her post something about time to be looking into a lung transplant. I would like to more of her story. Do you know who I am talking about? By the way thanks for your help.

@hammerheadham, you are trying to connect with @windwalker, Terri. I'm tagging her here to join the discussion.

Click her username to read more of her discussions and comments.

I would like to see about more people with alpha 1 that are living with mac disease. Thank you

Welcome to Mayo Connect. We are a patient and caregiver support group, so maybe you can start by telling us a little about your diagnosis. Then others who also have alpha 1 and MAC will see it and respond.

Sue

I am an MZ carrier with asthma, ABPA and MAC. Both of my sisters have COPD, and my brother has emphysema. They all smoked when younger (I didn't) but clearly the carrier status has had an impact on our lung health.

I am MZ but normal serum level. I have/had BX, Copd, Mac, cavitation and fungal. My mom who is still alive, had so many bouts of PN. My younger brother passed from lung failure at age 30