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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hi Kate and others. I have not posted in a long time. I do however follow all the posts daily and have learned so much. I have had Bronchiectasis and MAC for about 5 years now, but still have not been on antibiotics. I had a Left lower lobectomy in 2002 for a Carcinoid tumour in my lung, and then became ill in 2007, with CT showing multiple tree in bud clusters in lungs, and one slightly bigger nodule. My Oncologist without having done a biopsy of nodule because of it's small size and scar tissue, has thought it was the carcinoid back again, so has been treating me with monthly injections of Sandostatin, (known to slow growth and minimize symptoms) I also have had terrible arthritis through all this, I have had 2 shoulder replacements and most recently a knee replacement. I am 66 yrs old and still have such a zest for life. I have always been very athletic, loving biking, skiing, Kayaking, so all of these setbacks have dragged me down at times. This summer I decided I would tape up my arthritic knees and get back on my bike, to get my lungs in shape for the surgery. I even went biking the day before surgery, got the knee really sore, but lungs felt great, better than they had in years, I even managed up quite a steep hill.
Now I am almost 3 months into my knee recovery, it's really snowy and cold outside, at times too cold for my reactive airways, but I cannot wait, till the snow melts and I can get back on the bike, and get that fresh air moving in and out of these lungs. My chest xrays have been unchanged for about 2 yrs now, will have a CT later this year, my sputums have been positive for maic, when I have been able to get a good specimen up. Other than that, I will carry on with Ventolin puffer 3x a day, Alvesco puffer in evening, Airobika, chest physio, and excercise and hope I can stay stable for as long as possible without doing the big 3.
Thank you so much all of you for all your input, my heart goes out to all of you incredible strong people who are going through so much, with coping and living with these diseases.
Hugs to all from Canada.
Replies to "Hi Kate and others. I have not posted in a long time. I do however follow..."
Hello @joanney I read your post in the MAC/MAI group and noticed that you have a history of carcinoid cancer in your lung. We have a group (smaller than the MAC/MAI group) who are also dealing with carcinoid cancer. Very few of us, however, are dealing with carcinoids in the lungs. Let me introduce you to some members of our carcinoid group. @joannem
@joanney @amyh2439 @lucci50 @derekd @gaylejean @tresjur We would like to have you share your experiences with us. We learn so much from others! Best wishes as you navigate your health issues.
Hi @joanney. You can go here http://mayocl.in/2cK4PdN to see the conversation of the Carcinoid group where you can meet the people @hopeful33520 has mentioned.
@joanney, Joanney, Hello and Welcome to our Forum! We are so glad you found us! FIRST of all I want to apologize for not welcoming you before this. Somehow I missed your post .. I was out of the country when you posted and when I returned I completely missed yours .. so sorry!
So a Big Welcome! What a tough journey you have been on! Wow! So glad you have been reading our posts and have found help and hopefully support. I think you will find our group a big support on our shared journey .. with the exchange of our experiences and information that we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you WILL become your own best advocate!
RECOMMENDED READ ARTICLE
I would especially recommend an article I just happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
Joanney, a question I would have for you .. with your two statements "MAC for about 5 years now, but still have not been on antibiotics." and " my sputums have been positive for maic" .. are the doctors telling you WHY they are NOT treating the MAC? Is it because " My chest xrays have been unchanged for about 2 yrs now, will have a CT later this year,"? That would be a GOOD reason. IF the mycobacterium is NOT colonizing/growing .. there would be no reason for you to go on the antibiotic treatment .. it would mean that you are "stable" .. as I have been since May 2014. The mycobacterium IS in the lungs .. just not colonizing. I myself get checked at various periods of time depending on how my Mayo Clinic doctor thinks I am doing .. but the KEY is to be checked with Xrays/Ct scans and sputum cultures to make sure you are still "stable".
With all your other health issues it would be just GREAT if you are able to continue with your wonderful attitude toward maintaining your health and NOT needing the antibiotics! You just keep up that ZEST FOR LIFE!! Joanney, keep coming back to our Forum .. we are here for you every step of the way .. plus we enjoy your great attitude toward life! Hugs to you there in Sister country Canada! Katherine
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Thank you for coming back and giving the Connect members an update @joanney. I moved your post in to the large discussion on MAC so that all of the great members in this group could see your post.