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

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

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

Thank you all for sharing your stories. Sometimes it feels brave to be normal!

@narelled23
I have bronchiestis and have extreme shortness of breath. I do go to a pulmonologist who us treating me but nothing so far has helped sob. Can you tell me what antihistamine you take?

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.