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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have been reading the the previous posts (pages 1-10, 18-23) and have not read about many people having surgery to take out the damaged part of the lungs. My culture was negative for MAI for the first month and then it showed positive at the end. I'm assuming that means I don't have a high concentration of the bacteria in my lungs yet. The sample came from a bronchoscopy so I think it is reliable. My doctor has mentioned that I might be a good candidate for surgery but I'm not sure what that means. I haven't been to see an Infectious Disease dr yet or surgeon to talk about treatment but I thought I would ask the question here since you have been in the trenches so to speak. If they took out the right middle lobe (where the bronchiectasis is located) would I still be put on the meds treatment? Would they probably want me to be on the meds until I have the 12 months of negative sputum results before the surgery? Just wondering if anyone has any thoughts on this? Thanks. Jan
Replies to "I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have..."
@windwalker, Terri, my only concern in googling that you ONLY google medical sources such as Mayo Clinic, NHI, teaching hospitals etc. There is SO much garbage and misinformation out there on the internet .. we must be very cautious. Hugs! Katherine
<br><br><br><br><br>I know what you mean, that is why I only google in reputable sites like <br>Mayo, John Hopkins, NIH, etc.<br> <br><br>
@colapyrus, Jan, Welcome to our Forum, I'm so glad your found us! If you have read many pages .. you know I am a pretty straight shooter .. say it as I see it. Well, if I was sitting in your shoes .. I would never set foot in again in the doctor's office who even mentioned lung surgery! Get thee to a GOOD Infectious Disease Doctor who specialized in MAC .. at least .. or if you can afford it .. get to Mayo Clinic, Rochester MN or National Jewish! BUT DO IT!! Your health is at risk! Do your 'due diligence' .. educate YOURSELF by reading the pages of our Forum. Keep coming back .. keep asking questions .. we are all on this same journey together! Hugs to you on this beginning time! Katherine
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@windwalker, Terri, really good response, I so agree with you. I would also refer Jan to a another post that was made if you don't mind because I felt it was just excellent!
DOCTORS .. VOICE OF EXPERIENCE .. PROFIT MOTIVE
FROM MEMBER @windwalker Terri I will be going out on a limb here by saying this, but I feel compelled to. I have lost precious lung function over the years by seeing 'the best pulmonologists in the city', of any city I have lived in. This is lost lung function I will never regain. I have found that many drs (with great references) are not really staying current, nor have the time for delving into specifics. Lungs are the most delicate organs you have, I would not trust them to just anybody. Only go to highly reputable medical centers that are cutting edge. i.e. Mayo, NIH, John Hopkins, to name a few on the east coast. - I sincerely hope I did not offend anybody. I know there are good drs out there, but they are hit or miss in the 'for profit' segment.
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<br><br><br><br><br>Hello Jan, I feel like your questions are better suited for your doctors <br>because there may be too many variables to consider. Your dr would need to <br>do more extensive testing to determine if surgery would be a good option for <br>you. In the meantime, I would google all of the info I could on the subject. I <br>have found that when I research medical things; that a lot can be learned if you <br>look up some of these specialists drs that work at teaching medical instutions. <br>When you look them up, they list the publications they have contributed to. They <br>are usually short articles where they comment on treatments, studies, etc. <br>Please keep us posted. -hugs! Terri M.<br> <br><br>