← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Discussion
Comment receiving replies
@cacallahan

Thank you Katherine for your advice. I am just sick about this and find myself constantly crying. I don't usually get sick, and if I do I try to hide it especially from my son who is disabled. I just hope I am strong enough to be able to take care of y parents and my son. I just wonder what would happen if I choose not to take the meds? I will just talk to this doctor on Tuesday. Again thank you for your feedback. Bless you!

Jump to this post


Replies to "Thank you Katherine for your advice. I am just sick about this and find myself constantly..."

Cheri, keep your chin up .. the beginning of this journey is a scary one .. but trust it will get better. Figure out what "fills your cup" and DO IT!! Remember you CANNOT pour from an empty cup .. and you CANNOT give to your parents and your son when you are empty! Figure out even little ways you can fill that cup .. ways that work for you .. not anyone else .. just you. If it is a bubble bath .. a cup of coffee early in the morning before anyone else wakes up .. a book of positive thoughts read each day .. finding a local support group of caregivers that you can attend .. there are also those type online support groups (just make sure you RUN AWAY FAST .. if you find they are the "pity party" type .. you are looking for an upbeat positive supportive one!) .. calling an upbeat positive friend .. watching a funny movie with your family and LAUGH together .. laughter is GREAT medicine! .. I'm tired so can't think of any more .. but put your thinking cap on and take good care of yourself on this shared journey! We are here right with you .. sending you hugs!

Hi, I was diagnosed with MAIC, about 5 years ago, and been holding off on antibiotics.(Had a lung Carcinoid tumour in left lower lobe and had a Lung lobectomy then at age 52, never smoked, I am 65 now and have multiple nodules in lungs, probably maic nodules, but being followed by Oncology for return of Carcinoid as well) I see my Respirologist every 3 or 4 months, have a chest xray at that time, and from the results of that X-ray we have the discussion to treat or to wait. Meanwhile, I try to keep active, with walking and a bit of cycling, although I have nasty arthritis and it gets tuff at times. Sometimes when the weather is clear and the air is fresh, my lungs feel pretty clear, but as the air pressure and humidity changes, I get worse, my lungs get tight and I produce alot of mucous, mostly thick pure white, with occasional nasty looking stuff. I go to massage and she does percussions on my chest, I have a vibrating belt I use occasionally, use Ventolin puffer 2 -3 times a day, and Cortisone puffer(Alvesco) once a day. But the best thing is exercise. I felt my best this past winter, when I would go up to the ski hill and walk in the clear fresh air up there. I would like to be like this other gals 90 yr old mother, who has had Maic all these years and never went on the antibiotics, because like you, I am so frightened of all the side effects.<br />
Stay positive and somehow try to adapt to this nasty diagnosis. I was in shock, when I was told I had MAIC, in my lungs(I have what!!)