Hi Cjack,
From my experience, many are diagnosed with Alpha 1, later find out they have developed bronchiectasis and then some go on to develop NTM. I was diagnosed with Alpha 1 in 2007. I didn't develop bronchiectasis until 10 or so years later.  I have a small amount of bronchiectasis in my lower right lung. I'm a ZZ as well. 

I think you bring up a good question regarding overlap. I don't know but that might be a good task for our researchers to figure out. 

As far as augmentation therapy, no I don't receive it at this time.  I did for 14 years but about 5 years ago, I made a personal decision to stop due to several issues. I'm unsure if I will try again at some point or not. For now, my lungs are holding steady. 

It's good to meet a fellow Alpha. I'm glad you are here!! 

Lucinda,
Interesting how the sequence varies for those diagnosed with Alpha 1, NTM and bronchiectasis. In my case the NTM (MAC) led to uncovering the other 2 conditions. I had never heard of Alpha 1 prior to my diagnosis, thus ignored low-grade symptoms for a long time. Had I known that Alpha 1 was in my family I would have been much quicker to act on the small chronic cough and unexplained weight loss I was experiencing. November is Alpha 1 Awareness Month—spread the word! 

@Cjack
November is both COPD Awareness Month and Alpha 1 Awareness Month!! I've been spreading the word for both :)

November is Alpha 1 Awareness Month—spread the word!

Indywoman, 

We are excited to have you here! If you notice that certain months present a higher risk for flare-ups and exacerbations, it’s crucial to collaborate with your healthcare provider to develop an Action Plan. I’ve included a template to assist you in creating a strategy for when you sense an exacerbation approaching. This plan may outline when to increase your airway clearance, start a preventative medication, or when to contact your provider. Another recommendation is having an air filter in your home, using a nebulizer (bronchodilator daily) if prescribed and using an incentive spirometer. Hope that is helpful!    

https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#ActionPlan

@Alyssa Dittner
Thank you so much. This site has been such a boon- a landing pad. Thank you so much! 
Because I had pneumonia last year with hospitalization for 6 days and this has been going on for now the 4th yr. I do have a spirometer, and an AerobiKA and use them daily in that order- former in the morning-AerobiKA both morning and night. I do have a pulmonologist now- he's kind of old school, but he said not yet to the nebulizer, but I do steam inhalation twice a day. Take my albuterol and steroid inhalers, was recently on 875 mg. of Amoxicillin for 20 days when this started up again... the end of Sept. 

 Alway starts in chest, then goes into my sinuses and lingers like an intruder, but we have added Musinex twice a day, Flonase once a day, Neti pot and my wonderful husband just splurged ($1500. worth!) and got 3 highly rated air purifiers that came yesterday! 

 I'm leaving no stone unturned. Sputum samples in hospital and recently -- but show negative results. My life for these 5 months is now so constrained by worrying about crowds, and it has affected my sense of self, as I'm sure it does with everybody. I'm not overweight, (BMI is 21.1)  exercise 6 days a week with Strength and Cardio classes from March-October, but terrified now to go to them during these winter months. It affects friendships and restricts visits to grandkids...who pick up lots at daycare.  I'm grateful this isn't all year, though.
  I so appreciate your reply, Alyssa. Like all forums when people are desperate/scared, replies are a thrown life ring and eagerly grabbed. I am in the process of watching all the videos. TMI... : )

Indywoman/Margo

Indywoman/Margo,
How well you describe the way a pulmonary disease can overwhelm your life, leaving you isolated and feeling that you’ve lost yourself and your bearings in this world. I’ve been living with my condition for about 15 years. I felt like I was maintaining pretty well in the early years but when the COVID pandemic hit I went into a downhill slide. My career wound down and ultimately ended during that time. Both my physical and mental health deteriorated and I felt completely lost. With considerable effort, I’ve gradually been able to get my head above water and forge a path toward better health. Couldn’t have done it without the support of a wonderful husband! Glad to find this forum too.

Thank you for sharing this! I saw De Sandhaus speak several years ago at the annual Alpha 1 conference. So grateful for his dedicated research.