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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?
I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.
I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.
I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.
Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor
Replies to "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..."
I have also had hemopytsis - several times this past year. It usually lasts about 15 minutes and then stops on its own. When I was at NJH in May they said it will stop about 80% of the time on its own and 20% of the time you need some help. In my case I was told to lie on my right side (because my bronchiectasis is in my right middle lobe) then go to a hospital with intervention radiology. They can stop the bleeding by 'plugging' the blood vessel. Just wanted to pass that on. Jan
@colapyrus Jan, great Advice .. thank you! Again, a great video that explains the Bronchiectasis bleeding . PLUS good information for my File Cabinet .. thank you! Hugs! Katherine
explains blood/bleeding https://www.youtube.com/watch?v=YeomndWSom8
very good advice Katherine. I will take full dosage, MWF. I will try to get appt. next week. xo
@unicorn .. Christa I am proud of you .. you go Girl! Hugs to you! Katherine
Thanks Katherine, watched the whole thing. :Lots of good info. I'm going to find out what my bugs are!
Did you ever have to have the intervention radiology? My doctor just told me about it, said it was pretty new.
Dear All and @unicorn .. Christa I do not have a clue about intervention radiology .. I just googled it .. do your research .. AND your "due diligence"! Ask LOTS of questions!! Newer is NOT always best! Keep us posted! Hugs! Katherinne
https://www.google.com/search?q=intervention+radiolog+MAC%2FMAI&oq=intervention+radiolog+MAC%2FMAI&aqs=chrome..69i57.9758j0j4&sourceid=chrome&ie=UTF-8#q=what+is+interventional+radiology+procedures
I'm not sure if your question was for me but I have not. I had never heard of it until they told me about It this May. So far my bleeding episodes have always stopped on their own but I did check around for the hospitals near me that have intervention radiology depts just in case.
Yes I will do the same, good idea.
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Dear All, for anyone who has not had time .. or access .. when you do .. PLEASE take the time to watch the videos .. such a wealth of information! I just watched two of them .. WOW! Hugs to all! Katherine
https://www.nationaljewish.org/ntmvideos
https://www.youtube.com/watch?v=U1ZmJAQlgLw
https://www.youtube.com/watch?v=YeomndWSom8