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Tue, Mar 12 10:46pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@ktkarenst Welcome to this site. You will find a wealth of info and meet many lovely and knowledgeable people. I will share with you that it is my understanding that MAC doesn’t have a cure yet. It may “go away” but frequently comes back. That is why the length of being on the meds is at least 18 months. God willing there will be a cure sooner than later.

Tue, Mar 12 10:37pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker Yes, Terri that is so true about MAC and transplants and anti rejection drugs. Before I retired I had a little girl in my class with two transplants (kidney and liver). Most of us on this site are lucky to be able to use hand sanitizer before we eat at a restaurant. Transplant patients can’t use it as it can damage the transplants apparently. That was new info for me! The doctors at Boston Children’s Hospital told the little girl’s mom that so her IA stopped having her use it.

Tue, Mar 12 10:25pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@spencersok Amen! I have a dear artist friend who lives at Hampton Beach. She sends me beautiful sunrises and sunsets to remind me to trust God with the “big picture” that we are not privy to and also to remind me of the beauty of God’s handiwork. I too pray without ceasing. Suffering is part of living. But, admittedly, I have joked with God that I don’t mind pain – as long as it doesn’t hurt! And I seriously don’t like that there is so much suffering in this world! I have lots of questions for Him! I agree with your thoughts/comments . You are definitely a mighty man of God! God bless you both real well. Someday, we will have the answers we seek. Until then I continue to trust Him.

Tue, Mar 12 8:02pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@spencersok That is very kind of you to pray for us all. Thank you for that thoughtful gesture.

Tue, Mar 12 4:54pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@america here is my opinion on that. We moved to Tennessee for many reasons, but our ten children and thirteen grand babies all live in Connecticut. I was physically sick with MAC in Tennessee, but the lack of a support system (family) took more of an emotional toll on me, and the MAC actually got worse. After a year we moved back. I am still sick, but my family is ever present. That support should never be taken for granted. Whenever the good God calls me home, I would rather be found where my family is hands down! I hope this experience helps put perspective on the correlation between physical and emotional wellness. Moving away taught my husband and me a very valuable life lesson. Good luck. (@irene5)

Wed, Mar 6 7:42pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@laura34 The advantage of having an ID doctor is that MAC is an infectious disease. An ID doctor will know (should know) more than the pulmonologist in terms of best treatments for MAC. Most pulmonologists don’t have MAC as a specialty. My pulmonologist and my ID doctor work together on my behalf. (Two heads are better than one!) (Irene5)