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MAC & Bronchiectasis | Last Active: Mar 8 1:16pm | Replies (55)

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@mary80

@curlycuechristine Thank you, it’s important to know I’m not alone.
Unfortunately, despite having few symptoms, my lung involvement is extensive and there are also some cavities, so I have less chance to be cured. I will also have to do intravenous therapy in addition to the famous big 3. I am afraid of not being able to tolerate therapies due to side effects , moreover without guarantee of eradication. My pulmonologist told me that no one ever manages to be definitly cured… even if you become negative the bug comes back sooner or later, since it’s an environmental bacterium, so you’ll have to fight with this chronic condition lifetime… I don't want to discourage you, I do believe that if your disease is in the early phase you really have an excellent prognosis, but my case is more complex...
I also wonder how I will be able to have a normal life from now on... will I be able to take my children to the pool or the sea and take a bath with them? or play ball on the lawn without fear of inhaling soil particles? Will I be able to take a shower without fearing mycobacteria? Moreover I’ll have to avoid crowded places forever or at least wear a mask to avoid superinfections due to bronchiectasis... sorry for the outburst but you know, until a month ago I thought I didn't have any health problems... while now I have the prospect of a chronic illness to deal with… I'm still shocked…

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Replies to "@curlycuechristine Thank you, it’s important to know I’m not alone. Unfortunately, despite having few symptoms, my..."

I'm in my 6th year of treatment, I've experienced it all. I keep as active as I can and seek all Doctor & PT advice I can get. I use whatever DME I need to. There are self-help books to read. I live at high elevation and will relocate to sea level this year with a change of lifestyle but plan on staying active.