Hi, I understand exactly! I thought I was having a bad asthma attack, brought on by bronchitis, when I learned that I had bronchiectasis, MAC and a pseudomonas infection - it sent me reeling!

Here is what I learned for myself:
Almost nobody has heard of these conditions until they are diagnosed with them.
Everyone is different, both in their infection and their response to treatment.
Everything you read seems Scary with a capital 'S' at first.
There are a lot of different treatments used, and you will always wonder if your doctor has chosen the best one.
Your first inclination is to do everything that everyone recommends to get rid of "it" and make it stay away.
At first treatment feels like it is taking over your life.

The most important thing I have learned after 4 years, 3 doctors, and many hours of study is:
Bronchiectasis and the opportunistic infections that come with it are things I have learned to live with, not live for. Based on my own health and risk tolerance, I choose to implement the most important treatments and mitigation strategies and let the rest go. By that I mean, I have figured out which things are the most important to keep me healthy & concentrate on those. I call it the 80/20 rule. If I can get 80% of the benefit from 20% of the treatments and strategies, and that keeps me healthy, it's good enough for me.

My effort is concentrated on:
AIRWAY CLEARANCE - keeping mucus thin with Mucinex, N acetyl Cysteine, and lots of water. Using 7% saline daily, adding asthma meds as needed, and coughing.
STAYING HEALTHY - immunizations, diet, sleep, exercise, keeping my equipment clean, keep the water heaters at 138F to minimize bacteria growth
AVOIDING BIG RISKS - sick people, hot tubs, smokers, the soil around my home (probable source of my strain of MAC)
RESPONDING TO HEALTH CHANGES - increase nebs and add asthma meds as soon as any changes occur, rest as needed

So far, after 2 plus years off the Big 3, and faithfully following this routine, I have had one minor exacerbation treated with increased nebs and a course of steroids. My asthma and bronchiectasis are both diagnosed as "moderate" and I have a few other health issues that typically come with 7 decades on earth. My CT looks the same as the day I quit the antibiotics. My sputum remains clear and loose. I have some shortness of breath, and my six year old grandson now wins our footraces, but I think overall I am doing pretty well. If that changes, I may have to "up my game" and do more.

Here is a list of the things I don't worry about (caveat - I don't have GERD, so issue surrounding drinking water are not so important to me) - I don't boil my water, avoid showers or swimming pools, clean my shower head, worry about drinking water in restaurants...

My recommendation to fellow "bronchs" is:
Pick one or two up-to-date, knowledgeable resources and ignore the rest. I have chosen National Jewish Health (NJH) and Mayo as mine sources, your choices may differ. Ignore miracle treatments or cures - as of today, there are none.
If you need to start antibiotics, you will find a lot of help managing the side effects on these two sites - most people who must be treated find a way to deal with the meds.
Find a doctor experienced in treating your condition, or if that is not an option, one who is willing to work with you and consult with the experts in up-to-date treatment strategies. (my docs call NJH if they are unsure about "next steps" in my care.)
Find the level of effort that keeps you healthy and pursue it, forget the rest until you need it.

Finally, take a deep breath, and tell yourself "this is something I will live with, not live for."

Have you and your doctors settled on a course of action yet?
Sue

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