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MAC Support for my Mother
My mom was diagnosed a year ago with MAC and it's been ROUGH. She has extreme weightless, lowest weight was 67 and she is now 73/74lbs. She got her weight up to 80lbs and in the last 6 months has dropped again. We finally got approved and she starts Arikayce in 5 days. I'm nervous for her as I know one of the side effects is trouble with breathing, she is constantly out of breath with any movement she does even with home oxygen. Her doctor said that if this treatment doesn't work then he doesn't know what else we can do to fight this disease. I don't even know one specific question to ask just any tips would be appreciated for weight gain. We do very high calorie boost and mass gain protein powder in foods. I mostly am just asking for prayers for my mother and the success of this Arikayce treatment. I refuse to give up the fight and will continue to advocate for my mom. She is getting worse as of lately and I want to learn as much as I can about this disease and all the options for treatment and aid to put in as much fight as we can. She is on the 3 antibiotics but on very low doses as she is so tiny.
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Any articles or best websites for more info on the disease would also be great. Thank you in advance for anyone who reaches out. < 3
I’m sorry to see this about your mother. I hope things go smoothly and she improves with treatment . Maybe, this med will work, without bad reactions.
Have you talked to a nutritionist about her diet? I’d try to get guidance on it, since it could impact her as she recovers taking that med. It looks like the med is particularly hard on those with kidney disease…so, I’d ask how eating lots of protein plays into that.
Have they mentioned surgery?
I'm so sorry your mom is struggling so much with MAC. It must be so difficult for you to see her in pain and losing weight. The suggestion to consult a nutritionist is a good one.
My advice for you, if I may offer it, is to make sure you eat well, get sleep and have time with others . Every river has to have a source, and you can't help your mom if you are not physically and emotionally healthy. I know this is difficult when you feel such anxiety for your mom - I've been there too with my mom's emphysema. I'm wishing you strength and for your mother I pray the Arykace will be effective without debilitating side effects. Hang in there.
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1 ReactionArticle
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5550988/
Discussion
https://www.youtube.com/watch?v=NhkyK7o4RCQ&t=477s
You and your mother are included in my prayer. May her healing be guided by the Divine Physician.
Another discussion
https://www.youtube.com/watch?v=RLDwLp5CY84