@ann0616 Hi Ann, I also live in Madison. I have been diagnosed with bronchiectasis and MAC/MAI in the fall of 2014 after coughing up large amount of blood and an overnight ER stay due to MAC/MAI infection. The possibility of TB or lung cancer did cross my mind. But it turned out to be neither after the CT scan and sputum tests. It was suspected that I might have been exposed to TB as a child due to positive skin test although the disease never developed. Such an exposure was attributed to the development of my bronchiectasis, which in turn makes me susceptible to MAC/MAI infection. Although I do cough and have excessive mucus sometimes, especially in cold weather, I don't have other issues such as shortness of breath, fatigue, etc. I don't know which pulmonologist at UW hospital you will be seeing. I have been seeing Dr. Scott Ferguson for the past 4 years. I'm not on any meds for the time being. Dr. Ferguson and I agreed that we would take a wait-and-see approach and will only consider getting on the drug treatment when it becomes necessary. So far my CT scan and chest X-ray results show no worsening of my bronchial tubes. I am able to lead a normal and active life. For that reason, I'm probably not able to offer you much help in the direction of possible treatment for your case. But I do want to lend you emotional support and to let you know that there is no reason to panic at the mention of MAI. Until I came to this group, I had no idea bronchiectasis and MAC/MAI are such prevalent diseases. Although there is no cure for bronchiectasis, MAC/MAI is treatable. I don't even know if I'm still positive with MAC. Since there is no new development in the CT scans and chest X-rays for the past 4 years, I think it has either gone away on its own or has gone into remission. Either way, I'm happily living my life without worries. Please keep us posted of what is going on with you and let us know what you find out from your visit to the UW Pulmonary Clinic. There are plenty of people in this group who can offer experiences, suggestions, and support. One thing is for sure, you are not alone in this.

@ann0616...Welcome to the group.We're glad to hear you will be seeing a pulmonologist and hope that s/he is familiar with bronchiectasis and MAC. Prepare for your visit with copies of your records. If your medical journey is like mine, you have an asthma dr. a PCP and have visited emergency clinics often.Try to make a comprehensive narrative out of it. Also, I've found that the records don't always agree, so check the diagnoses. My clinic doesn't have any info from my specialists.Good luck and please keep us up-to-date.

Hi @ann0616 you may have noticed I moved your post to this existing thread so that you can learn more from others who have been diagnosed with MAC or MAI. Simply click VIEW & REPLY in your email notification and you can read more in this thread.

I wanted to thank @ling123 and @egayle187 for responding to your post.

Back to you @ann0616 how have you been feeling since your last doctor's appointment?

@ann0616 Kind of sounds like what I had happen. Generally healthy until a sudden case of pneumonia. Just completely out of the blue. It scars the heck out of you. I am the same age and also live in Wisconsin about 20 miles from Lake Geneva. I am seeing Pulmonary in Milwaukee at St Luke's and had another opinion at Froedert. I was diagnosed in 2015 and started treatment in 2017. My first dose was Nov 30, 2017. I have had several CT's along the way. Each time I have one I go into panic mode because I am scared. I have a CT scheduled for March to see if I can stop the meds. Now I developed a UTI so dealing with that. Nothing like being on and additional antibiotic and trying to find one that is not contraindicated with the BIG 3. (Azitromycin, Ethambutol and Rifampin) By the way I was thinking I may have been exposed when I went to a conference at the Monona Terrace as I was in the small closed room where they had the hot tub for a while.

Hi Ann -
Fear is a normal reaction to a diagnosis like this, especially if you rely on Google. Just be sure what you are reading comes from a reliable source like this monitored chat, or a medical source like NIH, Lung Association, etc.
If your CT shows evidence of infection, Pulmonology will most likely take sputum specimens to culture and find out which infection(s) you have. Be prepared to wait - these are slow-growing bugs, and it can take up to 6 weeks for them to grow out. Then they are subjected to antibiotic sensitivity testing so you get the most effective drugs for your strain. Also, the severity of symptoms and signs of damage or active infection are evaluated to decide whether to treat now, or wait and watch.
Most of us have limitations from the condition, and usually some side effects from the medication, but learn to live with it. In my case, tolerating the side effects sure beats the cough, fatigue and weakness that were gradually consuming my life. Bring your questions and concerns to the group - we have a wide range of experiences, many have other issues, and we try to support one another. As you progress from diagnosis to treatment, there are a number of topical discussions where you can post.

@ann0616 Hi Ann. Please don't freak out just yet. The report said 'the constellation of nodules CAN be seen in A patient with mai.' Meaning it is a possibility. It didn't say 'this patient' has it. Many of us, including myself have had nodules in the lungs, but not diagnosed with mai. Wait for the test results to come back. Wisconsin is one of the states that has the highest incidence of mac in our country. Have you read how to make changes at your home like raising the temperature on your hot water tank? The list of changes can help minimize the amount of mac you are exposed to at home. Your water pipes are the likely culprit. Plumbing pipes are a typical breeding ground where mac likes to colonize, especially in shower heads. The list is posted on the Discussion Board. Do you want me to go thete and retrieve it for you? Or have you already seen it?

@ann0616