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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hi. I am my mom's primary caregiver. She was recently diagnosed with MAC following a bronch clean out for pneumonia. She is 79, has other health conditions and is very thin. She has been loosing weight, consistently, for the last few years. She never has an appetite and just keeps saying that nothing tastes good. She has lost 25 pounds in the last few years. She struggles with fatigue, some days worse than others. Do the fatigue, the weight loss and the loss of appetite sound like MAC? We have not yet started a med program for MAC. Docs want to see her regain some strength and weight from recent hospital stays. We are thinking, and praying, about whether to go that route at all. Since we are new to this, I was glad to find this forum. Thank you for any feedback.
- Michelle
Replies to "Hi. I am my mom's primary caregiver. She was recently diagnosed with MAC following a bronch..."
I experienced and experience the same symptoms as your mom Michelle. I started losing weight and I didn't have it to lose. I continue to struggle with fatigue and trying to maintain the 89 lbs I now weigh. I used to weigh 105. My docs told me the same thing regarding regaining my strength and hopefully putting on some weight. Was your mom on antibiotics while in the hospital? The antibiotics destroyed my stomach and I now have SIBO and am fructose intolerant which makes it even more difficult to eat. If she doesn't have SIBO there are healthy diets that can help her hopefully gain weight. I will keep your mom in my daily prayers.
This all sounds very MAC...I too have another health condition (RA) which alone causes these things (weight loss...fatigue) so yes, I believe that once she gets the MAC treated she will begin feeling better
@orthogirl .. Michelle, I so feel for your situation. I have many friends who are caretakers .. it is a very tough role. Truthfully the symptoms you indicate are VERY typical for MAC .. weight loss, little appetite. fatigue etc. For me I could only say if I was sitting in your shoes .. I would request a COPY of the TEST RESULTS from the "bronc cleanse. That would tell you IF the mycobacterium is colonizing .. the NAME of the mycobacterium .. AND the NUMBER of colonies! Read over the report carefully! Do NOT let them tell you no! Get your Mom to sign whatever papers she needs to for you to get that copy!
Personally if you have read ANY pages of our Forum you know I AM BIG on being your own best advocate .. and in this situation .. you are your Mom's best advocate. AND you cannot be an advocate UNLESS you KNOW what you are dealing with. IF the mycobacterium is NOT colonizing . . there is absolutely NO reason for her to start on the MAC treatment. IF there ARE some colonies .. they SHOULD have set up a routine sputum culture to be analyzed in a specific period of time to see if/WHEN the MAC does/does NOT start to colonize.
They cannot possibly know if/ when she needs to go on the antibiotics unless she is checked again.. sees if the MAC IS colonizing.. Next question.. Is she going to an Infectious Disease doctor who KNOWS and is currently treating MAC patients?? This is VERY important to check out .. be frank and ask! We KNOW you want your Mom around for a lot more years .. truthfully you care a LOT more than the doctors do. Do your 'due diligence! Hope the above helps just a little! Sending lots of positive energy and a Big Hug in this difficult time .. know that you are here in a community of supportive people .. we are here for you every step of the way! Katherine
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That's me in a nutshell and is MAC related for me. That doesn't mean it is for your mom since I don't know what other health conditions she has, but that's what happened to me. Irene