New Diagnosis of MAC/MAI & I'm scared

@sueinoregon Hi. I totally understand where you are coming from with a spouse who doesn't understand this illness. Problem is, we don't look sick (many of us). My husband just tuned out my incessant coughing. He'd always question me as to why I don't have energy to do things. I felt like smacking him upside his head with a 2x4 and scream; Because I have mac!!!! It wasn't until my doctor said in front of him that I may need a lung transplant that he started to take this seriously. I am sorry that your hubby is being self centered about your condition. My hubby still forgets at times that my illness is still here and still something to reckon with. My husband has low spectrum asburgers syndrome, so you can imagine the empathy I get. That's right, zero. On the other hand, it has made me stronger. Sometimes having sympathy/empathy can make you feel like more of a victim to illness. To deal with my husband; I just keep educating him about this disease. I even read excerps from some of these posts. Mainly the ones about having a lack of energy. That is my way of proving to him that my fatigue is very real and is a result of having mac and bronchiectasis. I have a 2x4 if you need it! (LOL)

Hi Sue, My son is 44 and also diagnosed with MAC which is being treated by the amazing doctors at Mayo Jax. He has Alpha1 which effects his liver and lungs. In June of 2017 his diseased progressed to end stage liver disease, they could not transplant at that time due to the MAC. They did the same studies you mentioned to see if it reacted to the 3 antibiotics. It did so they started the therapy at the end of July 2017. By December the cultures where negative so we were able to get him on the transplant list in February. He will remain on the three antibiotics at least one year after the first negative culture. In the beginning his white count fell low so they have been giving him Neupogen injections to boost the counts. The low counts are a combination of the antibiotics and liver failure so they lowered the dosage of the antibiotics a little. His eyes are also checked every 6 months to watch for any changes the antibiotics may create but so far no issues there. So about 14 months after starting on the MAC treatment it is under control, no eye issues, continuing the antibiotics and waiting for a liver that is a match.

@ Terri. I have family in town this weekend and I had to tell them I am too ill to visit. I know they are taking it personally. It's just one of those unpredictable times when I'm coughing a lot, have no energy and not getting enough sleep. They say they don't mind the coughing just want to see me. Which means I have to get a shower, dress, and try to make conversation between coughs. Who wants to sit in a room and cough at people. Other than being very thin, I don't look sick. I am running out of ways to explain this illness. Flib

@flib....and there is a chance they are brewing a communicable illness you might catch! Tdrell

@tdrell Yes, and then there's that! Thank you. It's good to not feel alone even if sometimes you have to be alone. Flib

@aflib...Tell them that every exacerbation damages your bronchii and talking and entertaining causes constant coughing to do more damage. One of my doctors forbids me to talk for 3 days when the cough gets bad. If all else fail, tell them they could catch something from you. It is not lying-you could have something communicable at any time with MAC..

@flib Do they know you have MAC? Tactfully tell them to educate themselves. What tdrell said is so true. Relatives need to understand it is not you giving them something, but your having to protect yourself from their giving you something. My family is very considerate about that. Hopefully, yours will figure it out.

@terri It's so true what you say about talking. This is very helpful. I realize that I carry guilt because I don't live up to others' expectations. People want to feel helpful and they, sometimes, can resent being told their most helpful action is to be absent for a while.

Thank you so much for recommending the ntminfo.org website. I did find a nearby doctor that is recommended on this site. I was recently diagnosed. I have had a chronic cough for years. I feel great except for the cough. I have not had time to read all the threads on this site... I am anxious to hear others that just have a cough. I have not had my sputum tests or immune tests performed as yet.

@flib I can totally relate to what you are saying. As if it isn't bad enough to have mac and cough a lot; the fatigue steals your life. I cannot tell you how many times I have turned down invites because I just didn't have the energy to pull myself together. As for talking.... After I went on disability, I was contacted and asked of I wanted to work from home as a call center person. I had to decline on the basis that after talking for a bit; it would result in me going into a coughing jag. I don't get around to seeing all of my family when I visit my home state because all of the running around wears me out. I have explained my disease, but because I don't look ill; I know they think I don't care enough about them to make the effort. We just have to take care of ourselves. Our fatigue is so fickle at times, you may wake up feeling decent and want a short visit after all. I think you had mentioned getting some ginsing, you may opt to take some to get you through the visit.