Chest and upper back pain with bronchiectasis and pseudomonas

Thank you you have been an uplift to me
I’m extremely frustrated

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So my hope to get rid of infections 100% is irrational ? Be thankful to beat it down a notch?

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Hi Joann - Like Terri says, bronchiectasis predisposes us to all kinds of infections. Sometimes the remnants may still be in your body when treatment is done. Your best defenses are a positive attitude, good airway clearance, a doc well-versed in bronchiectasis, good preventive and self-care and listening to your body.

As with any condition, but especially more rare ones, you must also be your own best advocate. Sometimes that means gathering info and (gently) educating your doc, or insisting on additional testing and/or treatment. In extreme cases it may mean seeking a new doc with more experience with your condition.

Keep insisting and remember that a positive attitude really matters.
Sue

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Joann, I am sorry that you feel so frustrated. It can be daunting to fight this disease. Hang in there, and stay on course to kick it's butt. In all of the yrs I have been in this group; I have seen many changes. I have seen members get better, some get better and leave, some get better and stay. I have seen member's symptoms improve, and some members who test negative for yrs. I am one of those members. I have tested negative for mac since 2014. (I got it in 2005). I have seen new meds get approved and work on folks with MAI, the form of mac that puts cavities in your lungs. More and more patients are recovering from that, whereas before, it was damn near hopeless. A small percentage of people recover altogether and never get it again. Work on changing your mindset. Tell yourself you just aren't having it any more! And mean it!

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@joanng, A current test is the only way to know for sure about having mac or any other kind of infection. Remember we are prone to pseudomonas, aspergillus, and other bugs as well. You really cannot gauge whether or not you are infected by the continuance of your antibiotics. I tested negative for mac in 2014, but stayed on antibiotics (not the Big 3) for 6 more yrs as a preventative. I just went off of my meds this past Spring. I do think that you getting another lab test done was a good idea. Even if it is not mac, psuedomonas can sneak up on you as well. It is good to stay on top of things.

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Terri
I have pseudomonas, aspergillus and haven’t been able to get rid of it since last year. So that makes sense now why I’m staying on it. Must be for maintenance. I will see what the lab comes back with .
Joann

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Sue staying positive has been difficult lately but I’m trying and my partner is very positive he keeps telling me we will get through this.
My dr is the chief dr of the pulmonary of the hospital so it seems he’s very knowledgeable but I feel as if he treats this as a mild setback in life and he will help me manage it. Me on the other hand has been expecting to feel better and I’m not. He just prescribed an acapella device to help clear the airways I will be trying this and the yoga Terri has recommended. Hopefully I will see some positive changes soon.
Joann

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Hi, my name is Maryann. I am fairly new to this site (this being my first post), as well as all things Bronchiectasis as I was just diagnosed last winter and am currently awaiting results for MAC, which my pulmonologist highly suspects, from bronchoscopy done 3 weeks ago. I too have experienced chest and back pain that my doctor actually attributes to my lungs... she even went through my CT scan with me and the connection was made that each area I was having pain correlated to an area in lung with inflammation. My doctor told me that the area surrounding the lung is rich with nerve endings and being that the location of the inflammation/Bronchiectasis is near the outer wall of lung and is why I am experiencing what I am. So while the lung itself may not produce pain, it can cause the nerves surrounding it to activate. I used to think it was my back, my bra, etc., but once I saw the CT and how the areas of pain matched exactly with the “spots” on the film it all made sense and is now one of the ways I/we evaluate my symptoms. Matter of fact, evidently the bronchoscopy stirred things up and instead of getting better I became worse, especially this last week, with shortness of breath, low 02 levels, chest sweats at night (anyone else get that?) and return of lung (chest and back) pain... In addition to daily/consistent nebulizing of saline and albuterol (which thanks to following discussions on this site, I now understand the importance of consistent use...my doctor probably told me but I was a bit overwhelmed when I first got the news and somehow thought it was as needed) I was also put on Azithromax and Prednisone 3 days ago and today I am starting to notice a decrease in the areas of “lung” pain. Still have a couple of more days of meds to go...hoping it’ll just keep getting better ..... then I only have to deal with the CA air quality 😱

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Joann - Think "baby steps" - there will gradually be days when you feel a little better/maybe can do a bit more, followed by days when you feel worse again (maybe from overdoing when you felt good?)
Some things that help me get through the tough times are pictures of my loved ones, phone calls, good books and hot coffee or warm tea. I make a conscious effort to maintain positive thoughts - I do "three things I am grateful for today" or "three things that bring me happiness." Some people on Connect maintain a gratefulness journal to look at when they feel down. When my husband's arthritis flares, he swears by a good soak in the tub.
Sue

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