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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Kirkman brand is allergy free and a safe facility.
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1 ReactionPamela, I reposted this is MAC & Bronchiectasis as I saw it under "Harmonica Therapy"
Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela
Thank you Katherine - by the way, can you send me any links that have info on the harmonica therapy - I can not find your original email and want to learn more. Pamela
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1 ReactionWHAT??!! Bronchs are done under general anesthesia...any doc who does anything else is not a good one. I'm about to have my second...worse thing i experienced was feeling drowsy the rest of the day until the anesthesia was out of my system.
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1 Reaction@pamelasc1, Pamela and Boomer, for me personally I threw up 24 to 48 hours after general anesthesia .. so in speaking to a wonderful anesthesiologist he spent time explaining to me that with "twilight sleep" there is a spectrum .. say 1 to 10. Ten being taking me as deep as general anesthesia. That with a careful anesthesiologist I could be taken as deeply as necessary with "twilight sleep" without the horrific vomiting. After speaking with him I have NEVER had general anesthesia again! I now have on my medical record when going into a hospital/same day surgery the statement: I have a compromised respiratory system with MAI and Cylindrical Bronchiectasis being treated by Mayo Clinic. * *WORKS FOR ME: *Anesthetic: Conscious Sedation: Diprovan and Zofran worked VERY effectively. Also works: Anzimet/Versed
Now, this is just me .. but wanted to let you know there are options that YOU as a patient can fight for. As we get older there are ALWAYS potential side effects to general anesthesia .. I just refuse to take any more chances than necessary! Hugs to All! Katherine
Yes, Katherine, there are definitely anesthesia options. I am very sensitive to anesthesia and am treated with kid gloves whenever I have to go to sleep for a procedure. We are our best advocates on that one too - given the fact our lungs are already compromised, and especially if it isn't written in our chart about anesthesia difficulty. Irene
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1 ReactionPamela, here 'tis! https://connect.mayoclinic.org/discussion/harmonica-therapy-for-chronic-obstructive-pulmonary-disease/
Hugs! Katherine
@irene5 Irene, you are SO right! No one knows our bodies as well as we do .. and if we don't advocate for ourselves who will?! A few years ago a what I consider an arrogant anesthesiologist who I feared was not listening to me .. I didn't listen to my gut feeling and request a different doctor! He "took" me down too quickly .. my blood pressure plummeted .. they had to quickly cancel the procedure and send me home to have to come back a second time. ALL because some doctor thought he was god and would not listen to what I KNEW worked for MY body .. AND I did not listen to my gut feeling. Lesson learned. I now have that on my medical information so any other anesthesiologist KNOWS not to take me down so quickly!
I would recommend good medical records on your computer that you can update/print out and take with you to every medical appointment is one of the best things I have ever done for myself and for my husband! I have yet to have a doctor or medical secy not be VERY impressed with my print out .. I do the headings in one color etc to make things stand out :
WITH THE HEADINGS: At the top I start with all legal info-including insurance policies and numbers-emergency contact-has Health Care Directive/hen current meds/hen over the counter/Surgeries with dates/Health Issues with date diagnosed/Various Vaccinations-Last Eye-Hearing-Dexa-Skin Exam etc with date/meds that DO work for me/med allergies-side effects/list of all doctors with their fax numbers/vitamins currently taking. It does take a bit of work to get this info into a Word document .. but then all you have to do is update it as you go. Then a quick print out before an appointment and you're ready to go! I have found it is good to print out 2 copies .. the doctor always seems to like to read from one and ask questions .. I like the 2nd copy because I can't always remember everything .. nice to refer to! If my husband goes to the hospital I print out 6 or 7 copies. Then I hand one to EVERY doctor that comes in .. they seem to LOVE it .. in one document they can see what it takes precious minutes to find in a computer! Hope the above helps someone! Hugs to all! Katherine
@pamelasc1, Pamela, that is REALLY interesting! When I am coughing so bad I think my ribs are about to crack .. I just think it must be my Bronchiectasis or Reactive Airway Disease and just put up with it .. Hmm .. I NEED to listen to my own preaching and be my OWN best advocate! I just never thought of things like Pseudomonas .. not to be crude .. but what color was your sputum .. that could be a tip off for the rest of us. Pamela, thank you for this info .. it is helpful for all of us. Hugs! Katherine
http://www.medicinenet.com/script/main/art.asp?articlekey=20161
Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up - lovely subject! - I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela
@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.
I saw that actually Steve was adding Albuterol to his nebulizer ... which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.
I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful "flutter" I had to turn the "+" sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max "+" setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine