Help! Positive testimonials required

Posted by mary80 @mary80, Feb 19 2:35am

Hi, I’m new in this Group.
I’ve received a Mac diagnosis and Bronchiectasis in these days. I’m still in the phase of “no, it’s not true, it’s not possibile”
I’m 44 and I’m really afraid for the future, especially because I’m the mom of two very small children , 2 years and 6 months. I’m afraid I won’t be able to take care of them for a long time…
I really need to hear from you stories of positive experiences, is there anyone who got definitly cured ?
Do you think I could still have a normal life?
Thanks a lot

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@mary80 I was just diagnosed yesterday with MAC and the bronchiectasis diagnosis was a few months ago. I'm 43 and I completely understand how you feel. My pulmonologist assured me that my age was to my advantage and my overall health as well as the severity of the disease (caught early). This is a very individual disease, but I believe fully that I'm going to beat this and see the other side of it. I'm a firm believer in advocating for yourself and as we moms are often terrible at--asking for help when we need it! =) You are NOT alone and while the initial shock can be a bit much, you'll fight this and be ok. Get a good support system around you, ask for help (really, I mean it!) and read what you can about ways to keep the rest of your body (and spirit/mind) healthy through this process. My brother recommended therapy and it was the best advice I got, particularly as someone who cares for many others. Good luck and remember you're not alone!

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@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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@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…

Jump to this post

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.

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@curlycuechristine

@mary80 I was just diagnosed yesterday with MAC and the bronchiectasis diagnosis was a few months ago. I'm 43 and I completely understand how you feel. My pulmonologist assured me that my age was to my advantage and my overall health as well as the severity of the disease (caught early). This is a very individual disease, but I believe fully that I'm going to beat this and see the other side of it. I'm a firm believer in advocating for yourself and as we moms are often terrible at--asking for help when we need it! =) You are NOT alone and while the initial shock can be a bit much, you'll fight this and be ok. Get a good support system around you, ask for help (really, I mean it!) and read what you can about ways to keep the rest of your body (and spirit/mind) healthy through this process. My brother recommended therapy and it was the best advice I got, particularly as someone who cares for many others. Good luck and remember you're not alone!

Jump to this post

My MAC recurred after treatment and I have been visiting my pulmonologist and had an ID consult. They agree on holding off on treatment. I try to be active and I do the breathing exercises. Most of the time I feel good but have occasional chills and fatigue. Sometimes I cough up yellow sputum. I have learned to live with it and do my best each day. I am 79 .

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@curlycuechristine

@mary80 I was just diagnosed yesterday with MAC and the bronchiectasis diagnosis was a few months ago. I'm 43 and I completely understand how you feel. My pulmonologist assured me that my age was to my advantage and my overall health as well as the severity of the disease (caught early). This is a very individual disease, but I believe fully that I'm going to beat this and see the other side of it. I'm a firm believer in advocating for yourself and as we moms are often terrible at--asking for help when we need it! =) You are NOT alone and while the initial shock can be a bit much, you'll fight this and be ok. Get a good support system around you, ask for help (really, I mean it!) and read what you can about ways to keep the rest of your body (and spirit/mind) healthy through this process. My brother recommended therapy and it was the best advice I got, particularly as someone who cares for many others. Good luck and remember you're not alone!

Jump to this post

Take heart, dear one. Life does exist after diagnosis. I am 14 years out from initial diagnosis. I've had several different strains of NTM, cavities (that come and go), nodules (that come and go), and bronchiectasis. After two attempts at the Big 3 with horrific side effects, I gave up. I do my airway clearance as best I can. I am not a candidate for a vest because of back issues. I am 71...just fast-walked with my dog 2 miles this morning and played 20 minutes of Frisbee afterward; today is a good day. There are days, however, when I'm fatigued and discouraged and just plain mad about having to deal with this. But I have a good therapist, a strong faith, a wonderful husband, and caring friends. I don't often post because I don't want anyone to think I have it altogether...this is simply my experience. Your journey belongs only to you...I wish you the best.

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