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Did anyone get diagnosis with no breathing issues, life long controlle
MAC & Bronchiectasis | Last Active: Dec 10, 2024 | Replies (12)Comment receiving replies
Welcome to Mayo Connect where we are a community of people and their caregivers navigating the waters of many illnesses and conditions.
Can you give us a little more information about yourself and whether you have been diagnosed with Bronchiectasis and MAC? If so, and you have been asking Dr Google, you must be concerned about what you are reading - lots of the postings can sound pretty dire.
Rest assured that many of us are walking (or running) around many years after our initial diagnosis. Once you get a good pulmonologist who is familiar with these conditions, you should be having either a sputum culture or bronchoscopy to determine exactly what infection is in your lungs AND imaging and a full exam with medical history to determine how severe it is.
Only then is it time to talk about whether to take antibiotics and which ones. Many in this group manage their condition without antibiotics.
What led you to consult a pulmonologist?
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They found I had pneumonia when they did an x-ray at urgent care. I was told to go to the ER because I had already gone through 3 different antibiotics, and none were working. At the ER, they admitted me, did a CAT scan, and called a pulmonologist who did a bronchoscope or wash. All tests on the wash came back negative until right after Thanksgiving. I was in the hospital the first week of Oct.
My primary already wanted me to be seen by a pulmonologist after the hospital stay. The soonest I could get in was Oct. 3. At that appointment, even the doctor said I should have been seen sooner, yet his people didn't try.
So, as you know, this group is the top group in Southern California for all pulmonary services.
At that appointment, he showed me damage to my lungs and holes in the lower lobes, which he says have been there a long time. I am a severe, controlled asthmatic. I mean I use a repit enhaler and have to watch when I catch a cold, but I haven't been hospitalized in over 20 years. In all my ears of x-rays, no one ever saw any damage to my lungs before. I also have never had pneumonia in my life either.
He also said I needed to see an Infectious disease specialist to make sure I was taking the right antibiotics, yet I had no idea when that would happen. I am still taking the 3; everyone else takes it 3 times a week.
He wanted me to start the inhaled steroid called Breo, which turned into a mess with no one getting any contact back for a week.
I got some prednisone Fri. because I have been going downhill with my shortness of breath, and I know from experience it works. I was doing so much better yesterday, but I'm back to the tightening chest today.
I went from finding out I was sick with no symptoms to finding out I have this MAC with no pre-conditions that would make me susceptible to it, to getting sicker and sicker with nothing or no one seeming to realize I am going downhill.
I only checked online to see what it was after the PA left the message, and I couldn't get ahold of her. It was Friday, Thanksgiving weekend, and even my doctor's office was closed. It was pretty optimistic about what could be done. It is the lack of response from Doctors with my health going downhill. I am almost ready to head to the ER, which may not do me any good from experience. I want to go to my primary office tomorrow and insist I talk with someone and then have them help me get into the pulmonologist or find out what I need to do to stop this downturn in my health. I'm trying to remain calm, and it is getting harder and harder.