Hello Linda and welcome!

Boy, you certainly have a double whammy with having both Atypical Cystic Fibrosis and MAC! Your lungs will really be stressed. You have my heartfelt concern.

Your co-worker with these diseases is representative of many ... I've had NTM/MAC for 9-10 years and worked 60/hr weeks the entire time. I missed 3 days in 12 years due to illness. While NTM/MAC can be difficult to manage, it does help if one looks at it like diabetes or MS, in that you do need to 'manage' it. A good pulmonologist is key, but so is taking your meds (if meds have been prescribed), getting plenty of rest (even if you can't exactly sleep), and EXERCISE to increase your lung capacity (or prevent it from deteriorating).

Bravo to you, with your comment "I will not let this disease become who I am but just an annoyance that I will deal with as needed." GREAT to put this into practice! For me, NTM/MAC is way, way on the back burner of concerns in my life, and will never define who I am. Too many other things to do in this life! And there is really nothing to be scared of, with the diagnosis of NTN/MAC. To me, Cystic Fibrosis would be more of a concern.

There's a lot of very good information in the posts. Like @lindam272 did, try reading thru the many pages of the posts, and copy and paste those that are important to you into a MS Word document so you can easily find the info. Be sure to have your eyes examined by a good ophthalmologist since one of the drugs can cause blindness. I am now almost deaf in one ear from the drugs, but this is nothing when compared to the thought that, upon my initial consultation with a pulmonologist, I had lung cancer. Many CT scans look just like lung cancer, so in those cases a lengthy consultation with a good Dr and biopsy is needed.

Merry Christmas and happy holidays to you.

Paula

Hi, Paula, I have a question for anyone here that I haven't seen addressed anywhere on the forum - Do you all restrict yourself to places with lower elevations? For instance, I live in Phoenix, AZ which is about 1,000 ft above sea level. Many folks in AZ go up north to Prescott, Flagstaff, etc - mountains that have higher elevations. I visited Albuquerque, NM a few years ago before I was ever diagnosed and had a tough time just walking level ground. That is about 8,000 ft elevation. Any time I think about traveling somewhere, I look at what the elevation is before making a decision to go. Anyone else?

Linda, you ask "Do you all restrict yourself to places with lower elevations?" That you had difficulty with higher mountainous elevations in AZ and NM. This only happened to me once - I had real difficult breathing when we climbed the Arenal Volcano in Costa Rico 4 years ago - thought I wasn't going to make it. The two things to consider -- your comfort level, and the advice of your pulmonologist.

Can others from Arizona chime in here with their experience?

<br><br><br><br><br>Hello! In response to Linda's question about elevation being a factor in <br>lung function: Yes, it does. I lived in Tucson, Az. for 20 yrs. I moved to <br>Hilton Head, S.C. in 2012. My oxymeter reading was 90-91 while in Tucson; since <br>the move to sea level, it is now 95-97.    -Terri<br> <br><br>

@lindam272 .. Linda... Man, what a tough cookie you are! Warrior? YES you are! I am impressed! What a attitude you have .. there is not a doubt in my mind that you will beat this thing! I am REALLY glad you found our Forum .. you have a LOT to give and share with others here .. just your great attitude will help others! So many of your thoughts and experiences resonates with me .. thank you for sharing. Please coming back! Hugs to you! Katherine

@lindam272 .. Linda, Sophie gave you good advice. On past pages I have notes all the "base line" tests you should get plus the monthly and quarterly tests you should get based on which drugs you are taking. Hugs! Katherine

@sophie1019 Sophie that is really interesting! Would you share that color blindness app for smart phones? I had never heard about it! I had to stop the 5th antibiotic I was taking (Ethambutol) due to vision loss. I WISH I'd had that app .. might have caught it quicker! This app might help others!! Please share it! Hugs! Katherine

lindam272 and Kay, the "remission" is called "stable" by my Dr. Aksamit of Mayo Clinic. If I am understanding him correctly .. it means the mycobacterium is still present in my lungs but is not "colonizing" (multiplying). Yes, I am "fine" and consider myself "well" .. but I don't kid myself .. I am fully aware that the mycobacterium CAN begin to multiply in the future and as Kay says .. it is VERY important to live as healthy as possible and just FORGET about the MAC .. just be positive and be happy! As Kay said so well .. just give up ANY worry .. it will drive you nuts! My motto is "Put my energy into what I can control .. and let go of what I CAN'T control!" That takes away all the worry .. because we REALLY can't control this disease .. ONLY our effort toward our healthy living! So Linda .. be happy .. be positive .. and keep coming back! Sending you a hug! Katherine

@Paula_MAC2007 Paula, what a great post! I LOVE your idea of "try reading thru the many pages of the posts, and copy and paste those that are important to you into a MS Word document so you can easily find the info". That is a wonderful idea! I am going to try to add it under my initial post so people see it BEFORE they start reading! Hugs to you! Katherine

Terri, great response! Funny .. but I remembered something about a response about "readings" .. spent too much time going through my deletes .. finally found your post .. THEN realized it was YOU!! What a silly waste of my time .. wish I'd remembered I was you! Thanks for a good answer! Hugs! Katherine