Tell us how you "Live Life Fully" with Bronchiectasis and MAC

Thank you, Sue, for starting this discussion. I look forward to reading what others are doing. I have BE and MAC and currently have been on watch and wait monitoring for the past 2 years. Myself, I try to take some reasonable precautions that I have learned on this site. I have purchased a Safeway shower filter/wand and have it in both my shower and soaking tub. I have a 3 filter under the sink water filtration system in the kitchen (it only filters cold water) and have the water heater turned up to 140 degrees. I put the water I use for drinking and cooking, etc, through a Life Straw water pitcher and then use a hot pot to boil. I then store the water for the day in clean containers. I make my own ice from this water. I bring my own drinks or bottled spring water (I use Crystal Geyser) to restaurants and never use any ice from machines. I am not a soda person, but I will have an occasional soda from a can or bottle, but not a fountain soda due to the tubing. I stay away from hot tubs and swimming pools (both indoor and outdoor per ID doctor advise). I have no indoor house plants, again per ID doc advise. I no longer garden, but that is my choice, as it was not something I enjoyed that much to begin with. I mask indoors during the flu season. I nebulize with 7% saline and use my Aerobika for airway clearance twice daily. I then soak my equipment after each use in antimicrobial Dawn for 30 minutes. I rinse and let the equipment air dry after the first session, and after the last session, I put the equipment in a Grownsy bottle sterilizer. I live on a pond with a fountain. The houses are not that close to the fountain, but if it is very windy, I do not spend a lot of time out in the back yard. There are areas I know I need to be more careful with such as wearing a mask when I clean the house, etc. I need to work on that and be more consistent.
It is a lot for sure, and it is hard to explain to people why I do what I do. Of course, since it is not a well-known disease, I can tell they sometimes think I am ridiculous. I have done my part in educating a lot of people about BE and MAC, including health care workers that are not directly involved with this disease. Again, I am looking forward to reading what others do.

I do nothing. Have a cat and garden and just live my life. I can’t tell the difference from having allergies, asthma, COPD, and BE. I think everything except asthma must be mild.

@jmr69 I was diagnosed with MAC and BE in 2020. I do my nebulizer with prescribed albuterol/ipratropium bromide inhalation solution and budesonide inhalation twice daily while using my Respirtech vest. I never took the antibiotics for MAC.My condition has not worsened. I have not changed my lifestyle in any way. I garden, play mahjong, attend book club, use hot tub, take short showers with regular shower head, take daily walks outdoors, allow the dog to share the bed, drink water from refrigerator and faucet, etc. Maybe I have just been lucky, but taking all the suggested precautions would be too much for me.

I found that once I got set up with the things I had decided to do, it was not too difficult to stay with the routine. I nebulize 2x/day, doing aerobika only after the morning nebbing; I got a Bololo baby bottle sterilizer and set it up beside my bowl and Dawn for soaking equipment in my laundry room so both are always ready to use; Inrotate my hot water heater temp every 3 weeks between 12 and 140 (I put it on my calendar); and I wear an N95 mask for gardening and when using the outdoor water hoses (keep the masks in a handy place to grab one). It all just became easier as time went on, because I was: 1. Set up well, and 2. More and more used to and accepting of the routine. I now seem to have plenty of time to do things I enjoy.

Sorry - hot water heater between 120 and 140

@sarahlynn1960 @chisintexas @orangetiger @jmr69
Many times, as we can see, we all handle things differently and we all do things according to what is best for us, hopefully.
There are probably things like food choices, belief in vitamin supplements, and lack of stress that also comes into play that often we fail to think of or mention when we talk to each other about how well or not so well we are handling it all.
I have often thought about the fact that when a doctor is trying to understand our health and us in general, they will never really understand unless they are actually there in our day to day lives to observe us to really know all the factors that come into play and what we are actually doing or not doing.
Also, how can we or they get to know in their scheduled 20 minute allowance of time with us to get the full picture.
I say this because I often have said to myself while reading replies on our Mayo...."but do they have good genes, take vitamins etc. etc. eat a healthy diet etc. etc.......that would also come into play with how they are or not doing. "
Just sharing my thoughts and glad we can share all here.
Barbara

I am 72 and was diagnosed with MAC and Bronchiectasis three years ago after needing antibiotics 3 times in one summer for a lung infection. Since then I have felt healthy with only slight changes to my bronchiectasis in 3 years. At my most recent visit to the pulminologist, he said I no longer need a regular visit unless my condition changes. I elected not to take antibiotics for the MAC. I will reasess if I get sick again.
I use a Lifestraw water pitcher for all the water I drink, ice cubes, coffee, brushing teeth etc. When I travel I use a Lifestraw water bottle. I take short showers with the window open, and hold the showerwand away from my face. The only thing that was hard to give up was going to the community pool for exercise in the winter. 😕 I am an avid gardener and try to remember to use a mask most days. I am not good at remembering to do my breathing exercises using the Aerobika since I have very little problem with mucus. I feel that regular exercise and giving the lungs a good workout is important to my lung health. I wear a mask when travelling and am more conscious about gettting enough sleep and staying healthy.
This Mayo Clinic group and other online meetings and conferences are a terrific resource and make me feel connected and part of a community. I live in a rural area and don't know anyone else with this health issue so this connection is very important to me.

Hi Sue! Remember me? Things are good! After my respiratory failure that they still never figured out almost 4 years ago, I heard the word bronchiostasis mentioned during one of my yearly (now) pulmonary function tests. This was about 2 years ago. My respirologist said he was discharging me as a patient because my numbers were better than his! But I heard bronchiostasis and honeycombing. During my most recent test they said the honeycombing is gone and the bronchiostasis is so mild they aren't worried as I have no symptoms whatsoever. I walk, weightlift, work full time and and a grandma of 13 at 61. So i know nothing about this bronchiostasis or shall I expect something? No cough no mucous etc. Could it be a misdiagnosis?
Yvonne

I have a diagnosis of mild Be (over 10 years), possible mild COPD (recent), possible Asthma (20 yrs and now a question mark over whether I have it or not). I have generally lived a pretty full life, active with bushwalking, travel, gardening etc. However, over many years I have coughed a lot and have had a lot of mucus to clear...recently up to 3 cups per day. I have been nebulising twice a day with hypertonic saline for the last 4 years or so...recently have dropped it to once per day. The volume of mucus has increased over time and specialists have said that it can't be due to my Be as it is too mild to give that much mucus. The volume may be dropping with the antihistamine. Specialist says I dont have allergic asthma.

Six or eight months ago I started to have quite severe shortness of breath (sob) which has bothered me up until recently when, after realising I had relief when taking an antihistimine, I suggested to my Immunologist that I take a daily antihistimine...that has alleviated my sob. I was in a very bad way prior to this, losing weight and feeling I was failing badly...this antihistamine has turned my life around (along with the reversal of a Mod/Severe COPD diagnosis) as my spirometry improved. We don't know why the antihistimine has been working, but will do skin prick tests (again) with Immunologist in a cple months time. I am now feeling that I am back to my usual 'normal', which is good enough to live my life quite fully. The only things which bother me are the cough/mucus, but with regular airway clearance these are minimised.

I am 75, have an active life, do virtually everything I want to do, now that my sob has been addressed.
I cook regularly for myself, usually healthy food, eat out often, socialise, travel, go to the gym 4 times a week, often walk around 10klms, garden when I want to, swim in the ocean (not pools because of chlorine/other germs). I feel very grateful.

Despite a couple of NTM positives these were results were never repeated and I remain NTM free.

Thank you for this question, Sue. I think it’s an important one.

We may all approach our disease differently, but the bottom line is this is not a dress rehearsal. We have one opportunity to live our lives. We can choose whether we seek out pleasure and enjoyment, or move from one self-care task to another.

I do something I call a “pleasure swap.” When I’m unable to do something that used to bring me joy, I try to substitute it with something else that feels enjoyable, or even try something new. This way, I rarely feel deprived.

For example, I often take one-minute showers, and honestly, that can feel unsatisfying. So once I’m dried off and ready for the day, I might sit down with a cup of tea and a cookie or two.

Or in the evening, when I ride my exercise bike before dinner and would much rather be reading a novel on the sofa, I put on a favorite show, a true guilty pleasure, and watch it while I ride.

That’s my version of a pleasure swap. And it works for me.

Warm regards,
Linda Esposito