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New Diagnosis of MAC/MAI & I'm scared

MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)

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@ling123

@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.

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Replies to "@ann0616 Hi Ann, I also live in Madison. I have been diagnosed with bronchiectasis and MAC/MAI..."

@ling123 Thanks so much for your reply. I was so stressed two weeks ago because of the unknown but in a better place now. I have heard of Dr. Ferguson. Are you happy with him? I am seeing Dr. Anguiano. I know nothing about him. They wanted to get me in as quick as possible. I am not sure if he even has any knowledge of bronchiectasis. Like you, I don't have many symptoms right now. Again, thanks for the response. Means so much to me to hear from someone else with this diagnosis.