How it all began?

Posted by zscline @zscline, Feb 23 4:38pm

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.

@zscline

Very helpful and it seems to be correct that it's not usually one specific event that causes this BE condition. My story is similar to yours in some ways in regard to overactive airways and bronchitis; also, strep throat twice. Then, in 2000 I think I was exposed to something in the soil weeding in my mother's yard. I pulled up a weed and a big puff of gray dust came up with it. Shortly afterward I felt totally exhausted and was sick for approx. a month, but the docs pretty much blew off the idea that it was from that dust. Several years ago I went on a trip and came back with walking pneumonia. That seemed to be the final straw that put things over the top. Thankfully, I am finding quite a bit of help from nebulizing and doing my yoga-like floor positions that seem to help a lot to clear the airways. It sounds as if you are pretty much ontop of your situation too. Thanks for the input. I really do appreciate this discussion/ support group!

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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!

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@pawster

I've always heard that mostly older women get this disease, but I see there are quite a few men who actually get it also. Sorry to hear you are on a good route now. When you say you are "Now treated for 5 years," does that mean you've been on medications that long?

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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.

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@pegs

Our stories mirror in some ways, but I am so happy for you being a patient at NJH and hopefully they will set you straight for quality of life. I was lucky to tolerate 2 of the 3 drugs for NTM, had IV intervention for 5 months for the 3rd, but stayed on the others for 18 months until April, 2018. I have felt pretty good for years after, even with the BE until I somehow contracted Pseudomonas a last summer. It's been a struggle because I cannot tolerate the oral drugs they wanted to give me but had IV Meropenen for 2 weeks and have been nebulizing Tobramycin once a month for a week ever since. Nebulizing causes a lot of problems regarding gagging and coughing, but I'm getting through those 8 days. I am also on Azrithomycin 3X a week which I seem to be tolerating.
I will be 81 in March and try to stay in good shape walking and some indoor exercise. I ended my teaching career in Middle School 6th grade Social Studies/English and loved it. Good for you for teaching Jr. High as well! We are special people and yes different, but it's comforting to be able to share the journey. Be well.

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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.

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@pmmar1

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.

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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

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@pegs

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

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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!

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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.

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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.

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@virginiae

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.

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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.

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