How it all began?
I was told by the pulmonary specialist that my Bronchiectasis started with some sort of infection(s). It really did seem to fully show up following a bout with Walking Pneumonia.
Without getting too personal or getting into too much detail, I would appreciate hearing how this seemed to develop in others. Was it after an infection? Had you been having bronchial issues for some time leading up to this?
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Your comment about the "big puff of gray dust" and believing it may have triggered the affect was an intuitive thought. My doctor actually said that to me when we were first trying to figure out what I had, etc. So it's interesting how one doc thinks that can be the case and the other blew it off. There's just so much we all don't know about bronchiectasis and MAC/NTM. Best to you on your journey!
Yes, 5 years and counting. I'd say 10% of us are men, we all are mostly tall and slim build. Men are more susceptible to cavitation like me. I'm an alpha-1 carrier but serum level is ok. My mother has chronic lung disease but she is 91 and counting. My brother died at age 31 from lung failure.
Loved your teaching story. I taught English and Social Studies also and loved the junior high level so much! I was a competitive runner for years until my retirement. I now take daily walks and have several creative activities to keep me busy, mostly illustrations and writing prose and poetry. This has helped me through some of the more difficult times.
I'm sorry for your struggles, but I'm glad you have had some good years. We do appreciate "time off" from the disease, but we also know that it isn't predictable no matter what we do to try to eradicate it, which, for the most part, isn't possible. Thinking positive helps!
I wish you the best journey as you go forward.
Thank you Pmmar1,
I too paint and write. Two self published books and paint in oils and watercolors (not as much as I would like). I used to run but not competitively but am lucky to get out and walk every day. I do use an indoor small treadmill and cycle which help on bad weather days. Here in the desert southwest we get a lot of wind, not good wind, and about 5 months of heat which I no longer tolerate very well, but make do. Wish I lived at the beach! Many thanks for the positive words and same to you.
Currently I am dealing with an exacerbation of some sort. Saw my pulmonologist last Friday and am on steroids and will continue taking the other meds. Taking a while to get better, but hopefully sooner than later.
Best to you as well and stay well right?
Pegs
Very impressive artistic qualities! I have published a children's book of my illustrations and poetry for 3-8 year olds -- in 2019 -- and just before the pandemic hit! That was an interesting time!
I have lived in AZ and know a lot about the wind and desert way of life and understand the reason you would rather be on a beach! I live in the mountains of Colorado, which presents its own set of MAC/Bronchiectasis health problem issues with altitude. But we'll do what we need to do to be comfortable in our different environments!
I'm sorry about your current health problem and will keep you in my thoughts and prayers. Hopefully, you will be feeling better soon! Meanwhile, continue to be creative! Best wishes!
Miss diagnosed with asthma for 30 years treated many times for exacerbation with oral steroids on inhaled steroids for years finally asked to be seen by another pulmonologist when I was prescribed prednisone daily. Diagnosed then with BE and Mac. Weaned off of prednisone and started ACTs. No treatment for MAC. Feel much better.
I too was diagnosed with Bronchiectasis after a bad bout with pneumonia last year. About a year before that I had been diagnosed with Sjögren’s syndrome, which is a risk factor. I had my Sjogren’s symptoms under reasonable control until the pneumonia hit and then the jolt to my immune system slammed me with a Sjogren’s flare, which sucks all the moisture out of you and made recovery more difficult. I have had 2 sets of cultures and haven’t grown any NTMs thus far, but this seems rare and I feel like a sitting duck for an NTM, so I am taking as many precautions as I can. I use an Aerobika but can hardly ever get sputum out unless I’m sick. I’m seeing a new Pulmonologist tomorrow and plan to discuss nebulizing - if that’s what I need to do to stay healthy I’ll absolutely go there. Thankful for this group.
I'm not sure what NTMs are (and maybe don't want to know : < ) I don't want any more to deal with than this BE, which is enough. Sorry you have that extra health issue. I use a nebulizer and find it helpful, if only just as a very relaxing process that will thin the mucus, but I don't get much out of the Aerobika. Quite a few other people on this site seem to really like them. Mostly, I have to do positional exercise ( basically, it's the floor yoga pose where you lay on your back and elevate your legs above your head. If you are okay doing it, it is fast and pretty effective in helping to get the phlegm to release to be expelled). Fun stuff, I know. Good luck to you, and yes, I am also grateful to have this group to communicate with.