Help for my sister
Hi, I just recently joined this group so I can better understand what my sister is going through as she was diagnosed with Mac a few years ago. She has completed a whole year and a half of antibiotics and was doing better, but now she’s back on doing the nebulizer twice a day. I hope to fully understand this disease and how debilitating it may be. I feel like she’s all consumed with this illness and not living her life anymore. Is this common?
She does work out and watches what she eats but rarely ever wants go anywhere because she’s having to do this nebulizer once or twice a day and I don’t understand how involved that really is. Would this make it hard for her to go on a week vacation? How much does this disease consume your life? Does it cause depression ? Hoping y’all can reach out and help me so I could better support her. Thank you so much.
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Thank you very much. I will share your post with her.
Having read your comment "I read that this disease can go away, but can come back." I want to be sure of what you were referring to. Bronchiectasis, the chronic disease, will not go away ever. It is permanent damage to the lungs.
Now, the infection, bacteria within the lungs can be treated with the antibiotics to hopefully clear up the infection, bacteria within the lungs. Some people have success with the antibiotics and some have a hard time clearing out the infection, bacteria even with taking the antibiotics. It is true that if you are fortunate to have cleared the infection with the antibiotics it doesn't mean you won't again develop another infection, bacteria again.
One nebulizes and does air way clearance methods to hopefully keep the mucus moved out and not sit in the lungs. When mucus sits in the lungs and not cleared out it allows for greater chance of contracting infections, bacteria in the lungs.
From my understanding and personal experience, so far, nebulizing, air way clearance methods and light exercise can also help to hold an infection, bacteria at bay and not get worse. Up to now my infection continues to stay at a low level and I feel fine at 82 and two months away from 83. I was diagnosed in August of 2022 but had obvious signs of it since 2018 prior to being diagnosed and then told in 2023 of the infection that I apparently had had before 2022 due to what I was bringing up....a yellow/green mucus plug. I no longer have that color mucus, it changed to a light yellow after having started nebulizing etc.
Hope this helps you further with all that you have come to understand about what your sister is dealing with and why she may not be ready, just yet, to do certain things she did before.
Barbara
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3 ReactionsThank you, Barbara for giving me more information about this illness. You explained it so well . Bless your heart for all you have to go through to fight these infections.
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2 ReactionsJust saw your post and wanted to let you know that the psychological aspects of being diagnosed with this can at times feel as challenging as all of the things one has to do to have the best chance of avoiding infection and worsening of the condition.
Nearly everything one encounters—situations and environmental conditions, crowds, water sources etc.,—can feel like a threat and it's a daily battle to try and shut out some of those things and simply LIVE LIFE. Ironically, just living is exactly what one needs to do to be reminded that this isn't a completely debilitating, joy sucking condition. She should feel free to travel, and figure out ways to feel relatively secure doing so—finding the right equipment to travel with, water filtering, mask wearing and committing to daily airway clearance which is really what personally gives me peace of mind.
I am 47 and we travel quite a bit so I take my nebulizer with me and even bring my baby bottle sterilizer—whatever makes it easiest to deal with and maintain my routine while on the road. I also buy spring water wherever I'm staying but other than that, I feel free to do whatever I want. I hope she can feel that freedom and not feel trapped by this disease.
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