<br><br><br><br><br><br><br>Hello Kate and all,<br>Since you asked us all to reply, I'm updating you on my status. I was diagnosed with MAC a couple years ago after undergoing a bronchoscopy . About three years ago, while undergoing an unrelated test for my heart, it was discovered that I had lung nodules.<br> Because I did not have symptoms at that time, my Dr. just did CT scans every 6 months to keep an eye on the nodules. However, I wasn't comfortable not knowing what my actual diagnosis was so we did the Bronchoscopy, which confirmed the MAC. That's when I found<br> this website which led me to Dr. Aksamit. I went to see him about a year ago and he agreed with my Dr. that we would not start treating the MAC at this point because I'm still relatively symptom free. I will see Dr. Aksamit again in December. Thank you all<br> for posting your experiences with this disease. It's helpful. I pray that we will continue to find out more about good treatment for this disease.  Rosie from Minnesota<br><br><br><br><br>

Congratulations Kathrine.  Fantastic news and right before thanksgiving 🙂  

Thanks for sharing your experience. I was admitted to the hospital for biopsy of a 9 mm lung nodule only to be sent home when the danger of puncturing the lung was greater. A scan taken in the hospital also showed that the nodule had decreased in size. So that is all good. I have not been diagnosed officially with MAC because I can't provide a sputum sample but will see my doctor next week to see which direction he feels we need to take. I would like to have a bronchoscopy and just get it over with but he can't reach the nodule and that has held us up.

KateThanks for asking. I'm on the big 3 for one MAC cavity in my upper right lobe (finally diagnosed in July 2016 after pneumonia in Dec 2016 and a 'abcess' they watched till a bronchoscopy lovage showed MAC. Going back to Mayo in Jan. The cavity wall is smaller, so they might do surgery. I tolerate the meds but they still nauseate me at times and I'm tired. Nothing showed on my last culture. I do have a question. Did you say you had geographic tongue? Was it from our meds?I'm going next week to see my PC doc, but I have I red streak on my tongue where the papillae is gone. I think it might be that, but just wondering if you have it. Sounds like not serious.Just another part of this! Have a great tripKay S

Good idea and Happy Thanksgiving to you all. My cough is improving and less phlegm so that's hopeful. Still a little nausea when eating so appetite still off. But I'm thankful we live in America and are blessed with such good medical care!
David

Hi Katherine, Jan in GA here. I have been reading the posts, but have not added anything in quite a while. As you remember I was DX in May,"15.... after having pneumonia 3 times in 12 months.....went on the Big 3 twice. Ended up in the hospital twice. Lost 30 pounds. Decided not to take the meds as for me the cure was worse than the disease. Found a new MAC doctor at Emory/Atlanta. My main issue is fatigue. Some days are better than others, but I am still able to do anything I want....just takes me longer. I am working with a nutritionist, lung rehab and Dr. Colin Swenson. He recommended the Spiriva inhaler and it has been a HUGE help. My o2 stays in the 95 + range. I am not on oxygen. My last CT Scan he was delighted as my nodules had actually gotten smaller. YAY.
We have a doctor (surgeon) in our support group who has MAC. He recently went to the symposium in NJH in Sept. He spoke at our last meeting and gave such sound and comforting advise. Live your life to the fullest, don't get so hung up on the disease it consumes your life and enjoy what life you have. He flies all over the country, wears no mask, and stated a nutritionist who spoke gave the most insightful information.
I was overjoyed to hear his "down to earth, sensible advice" as that is one reason I stayed off the internet. I was driving myself nuts trying to do all the things suggested. I just read, research and do what I think my body can tolerate.
Thank you Katherine for ALL your effort to keep us informed.
May God richly bless all of you and hold you in His mighty hand daily. May we all be thankful for the lives we have and enjoy each day, good or weary to the greatest of our potential.
Jan in GA.

philomena...congrats on the good news! tdrell

Hello katherine, I'm so happy for your news. Did you do CT scan or the sputum culture? The Drs. the I saw never did sputum culture on me. When I see my Pul. Dr. end of this month I will ask him why he never mention about sputum culture. I still having hard time sleeping and I tried the unison and they gave wired feeling. Now I'm not taking anything for sleep. I'm so tired b/c of not sleeping. Thanks for all of you for your input. Happy Thanksgiving to all of you. Cila

Katemn...awesome awesome that you are stable!! thank you for sharing. A type of gift for the holidays!tdrell

Great news Katherine! I haven't written in awhile so here goes. I left my pulm. Dr at Duke. You would think they would be good, right? It's Duke! But, as we know there are many docs out there that just aren't well informed and you have all educated me so well I can tell when someone knows what they are talking about. Met with new Dr. at UNC Center for Bronchiectasis Care where they treat not only bronch. but MAC as well (which I have). I have a mild case with only mild symptoms - no appetite, mild weight loss, mild fatigue (not sure if that's the MAC or my lifestyle!). My doctor is holding off on drug treatment for now but I am using an Aerobika to help me break up some of the mucus and she said that can actually reduce the amount of MAC in my system. I have to go in every 3 months for lung function tests - if there's a 10% decrease in my lung function we rethink the game plan. I also have a six month ct scan or chest xray. If it's stable I can go yearly. I see her again next week but I think the appts with her do the same thing. 3mths, if stable go to 6 mths and then to a yearly. If I have a cold/respiratory issue I have to come in with a sputum sample which so far I haven't been able to do. I don't cough anything up - never have. So far I feel comfortable with her other than her saying that I'm contagious to people that are undergoing chemo. I know I asked you about that Katherine. That was in a writeup she gave me to read after my last appt. I'm going to ask her about that next week as I haven't read that anywhere else. So, I'm very skeptical about that. Overall, I feel great. I wish I could send that healthy energy to those of you that struggle so much. Instead, I'm sending you good thoughts and wishes that you will have better days ahead. Janet