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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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Terry, I was at NJH in May and was told to clean my Aerobika once a day. Use it, disassemble it so that it will dry again, use ii again and then clean it. They said The sterilizing should be done once a week. I use the microwave bags for that. I don't use saline though so I don't know if this process applies to your situation. Jan.
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1 Reaction@katemn thank
you saving my post and sharing it. Good lung hygiene is critical.
@heathert
Hi Heather! Not only does the cardio strengthen your heart and lungs, but
conditioned muscles use less oxygen. That helps with being so short of
breath.
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2 ReactionsI have a question about something I have not come across on this forum. Since we all have lung disease in varying degrees of seriousness, I am wondering if anyone has any thoughts about living in a home with a radon mit system installed to keep radon levels "normal." Thank you in advance.
@jentaylor
Awe, Jen, thank you for your kind words. I am reading this post for the first
time this a.m. Ironically, just last night, my husband commented to me that my
whole attitude has changed since last Nov. That is when I went through the two
pre-qualifying tests for a double lung transplant. For the last 10 yrs I was
positive I would expire by 2017. A dr actually told me that was highly probable,
plus, I felt like I was dying because I couldn't breathe very well, I coughed
constantly to the point of vomitting and pulling muscles. I could not walk 20 ft
without having to sit down and catch my breath. I just accepted that I was not
going to live to see 60. Treatment from the Mayo Clinic has greatly improved my
quality of life. When you feel better, you do better. I am now a fighter. I DO
NOT ACCEPT that I will die too young! Dwelling on illness and death can be a
self- fulfilling prophesy. The mind is powerful. The more I believe I am well,
the better I get. No kidding! I hope today finds you in peace, Jen. I also hope
you are able to continue your walks. Keep your body moving. We have your back
girlfriend! - Terri M.
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2 ReactionsWant to make sure that I understand. You use your aerobika twice a day (after first use-disassemble and allow to air dry) but only clean/rinse at the end of the day after second use? Did you get the sheet where the electric baby bottle sterilizer had been crossed off as an acceptable method to disinfect the aerobika? Will ask NJ if when using a nebulizer twice a day, it need only be cleaned/rinsed after the second use. Thank you. Terry
@windwalker As I have mentioned before I don't always have time follow this string because it's not a problem I or anyone I know has, but this tip is great, really for all of us. Another reason to get exercise. My brother had a heart attack about 6 years or more ago and at this point he is operating at something like 16% lung capacity. I know his problems stemmed from lack of exercise, he and I were both negligent about that as we got older, and we both had been fairly active when younger. I am so glad that about 6 or 7 years ago I started getting active and now am very active. At 69 I have outlived both of my parents and I am sure it is because in those days people were just not aware of how important it is to be active. Now they even say it benefits your brain and cognizance.
JK
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2 Reactions@irene5 Isn't this something you would only have done if your house had shown positive in a radon test? This was something that was a huge issue for a while in NH here (the Granite State) but I haven't heard much about it for awhile, maybe because we have not been looking at homes to purchase. We did have our home tested when we bought it.
JK
JK - I live in Arizona where there is very little radon except more rocky areas by the mountains so there isn't a connection with MAC and radon for me. It's about soil and water, the way I understand it. Linda M
I just looked at the sheet I got from NJH and the baby bottle sterilizer is not listed so they must have revised the sheet. These are the methods listed: boiling, microwave steam bag, isopropyl alcohol, and hydrogen peroxide. Jan
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