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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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@extracare808. I am sure you are right. I think I got things messed up when I talked to the PA. My appointment with the doctor wasn't to be until next Wednesday (27th), but the day after my bronchoscopy I started feeling terrible. I got in to see the PA and she told me this which I apparently misunderstood. She did order steroids for a viral infection that worked great and within a day was back to normal. No aching and no cough. Thanks for bringing that to my attention. This site has been so helpful to me!.
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2 Reactions@ginak Aaaaawwe…...So cute!!! Koalas seem so sweet. What an experience you had! You are a beautiful woman too. I swear, I think they need to rename MAC the 'Pretty Girl's Disease', How is it that every single member on here is a pretty girl? I am sure there are a few pretty guys milling about this group as well. Anyhow, are you home now?
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2 Reactions@ginak I love Australias animals,we go there quite often as not far from us.
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1 Reaction@@ windwalker. Me too, me too, I'm a pretty girl. Flib
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1 Reaction@windwalker , Aww thank you. I agree with you about all the pretty women! I’m Still here for one more week. I’m now in Canberra to just visit with my daughter and her new in-laws and then I’ll be heading home. I noticed while I was in Cairns by the beach, which is very warm and tropical, I wasn’t coughing as much. Even during my lung clearance with the Aerobika and nebulizing the saline. My daughter commented on it also. I think it was the ocean air!! Now that we’re far inland and in a bigger city, my throat clearing and intermittent cough has returned. Anyone else notice a difference if they’re by the ocean?
@heathert Australia seems far away from everywhere! I joked with my daughter that I had to come into the future to see her! 16 hours ahead of NYC! Where do you live?
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1 Reactionpost for Flib
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3 Reactions@ginak I live in Wellington New Zealand, 3hr 50min flight to Aussie. We are going to Surfers Paradise in May for a friends 50th. Looking forward to it. Hope you are having a great time, dont forget to leave the wildlife behind! Did you go the the great barrier reef
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2 Reactions@heathert You are close! It took me a total travel time of close to 25 hours (including a 3 hour layover) to get from NYC to Sydney. God willing if I come again next year I would love to visit New Zealand while I’m this close. We did a tour to the Outer Reef when we were in Cairns. I was a little worried about the jellyfish, but we did enjoy it. The only thing I’m bringing home are some t-shirts. Lol
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1 Reaction@flib, Is this you?!! Who is this a pic of?