← Return to Starting MAC treatment with "big three" drugs: What to expect?

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@sueinmn

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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Replies to "Hi, I understand exactly! I thought I was having a bad asthma attack, brought on by..."

Hi Sue. I will be seeing the infectious disease doctor on Monday so will find out about treatment. My pulmonary doctor said that if it were her she would start treatment. I am having my Hill-rom vest delivered Tuesday. I have not been feeling well for the past week. Have that feeling of pneumonia in my chest. Could you explain what an flair up feels like. Just wondering if that is what’s going on with me. Also I have really dry cotton mouth and I am constantly drinking water that I boil. Have you had that problem? We put a water filtration and bacteria on our house water system. I have a hot tub however I have not been in it in the last 5 years. Probably have only used it 10 times in 15 years. Doctor said I probably got it years ago whenI used it. I have always enjoyed my hot showers too. Do we ever really know how we got this? Husband says we will never know so stop trying.

I was recently diagnosed with MAC. I started the big 3 and had a bad reaction. I am off meds and now under observation until March—will be referrred to IFD dr. If disease has progressed. I am asymptomatic except for tiring easily. Is it better to wait until I have more symptoms? Will disease continue to progress at a slow rate? Thinking I will go to Duke or Chapel Hill MAC specialist for second opinion. This is overwhelming!