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

Hi @marier welcome to our group, I hope someone on our group will be able to help you, I live in New Zealand so am unable to help, please dont hesitate to ask us anything you need to know, this is a wonderful group of caring people.

Thank you, all! I am so much more knowledgeable after reading all these posts! I look forward to the support this group offers and hope that I can help someone else as we venture through this journey.

Welcome Linda
I started meds for MAC in July and the support of this group helped me through the beginning. I was very nauseated at first but good now for the most part. For me worry was the worst part. That's much better thanks to the forum and just acceptance.

I just try to live healthy and then forget about the MAC as much as possible. I was depressed till I learned to let go. This group is positive.

Ask questions and keep letting us know how you are doing. Lots of folks have this crazy disease. It goes into a kind of remission, but we don't know if there might be people out there who are totally well after meds and don't bother being on this website. I know one personally who had MAC and her doc says she is fine now.

It's very different for everyone. Hope you do well with it.

Darling picture of you. Take care. Good 2017 with healing!
Kay S

Hello Marie, welcome I'm glad you found our forum. There is a Mayo Clinic in Jacksonville Fl. I don't know how far is it from where you live. Read the forum way back I think there is a good Dr. that knows more about MAC. We are all here for you. I will have you in my prayer. Cila

I finially got a call from mission infectious disease in asheville nc today and i have an appointment this thrusday evening. I sure hope they treat me better with mai than asheville pulmonary did my wife , they act like its nothing to worry about .

hi Marier, welcome to this site....you will find it very very helpful and supportive. Our Mentor Kate is traveling but will be back. In the meantime you will find it helpful to read over comments from the past.
there are links to helpful websites....also be sure to try to view Nationaljewish.org/videos
they have the videos from the all day workshop in 2015 and then add 2016 after "videos" to see this years.
world wide speakers....all experts in their fields....and in 45 minute segments.
NTMinfo.org also another invaluable site
happy new year coming up and welcome to the site
tdrell

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?

I have also been diagnosed with MAC. Started one treatment, but in so doing I was taken off my blood pressure medicine and it went out-of-control. Was in the hospital for several days. Scared to try again.

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?