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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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Helllooo. My name is Jennifer and I am from a Toronto, recently diagnosed with MAC and bronchioectasis. Am 61 just retired Social Worker. I was recently told by my respirologist, after a pulmonary test, that I have lost 1/3 of lung capacity. Have asthma as well. Don't have a lot of sputum, and am moderate for bronchioectasis....have some symptoms but generally am pretty ok. Will I be able to get lung capacity back. Recently started using flute
To clear some mucus....I think my Dr has the personality of a nat, and I'm thinking of going to Mayo or Jewish....if we can buy insurance in states
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1 ReactionWelcome...! Flute as in the instrument?!
It's a hand held machine cnt remember the name of it, but it doesn't seem to wrk. I'm glad I found this support because I certainly can use it
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1 ReactionHello Katherine, how you doing with Expand -A - Lung? I got one from amazon. Did it help your breading? Did you used Aerobika for your bronchiectasis? Thanks. Cila
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1 ReactionWelcome Diane, I'm sorry your going through difficult time. It will get better and I remember the first time I was diagnosed w/ MAC I was terrified. I'm doing a lot better now mentally and not getting panic attack. I have been taking the 3 meds for 6 months now. I always look at the bright side and keep telling myself I will not let this critter to make my life miserable. We are all here for you. God Bless you and have you in my prayer. Cila
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1 ReactionThank you for your reply and support. So far I have Not let it take over my life. I also have not begun the protocol. After reading everyone's horror stories on the side effects I'm greatful to still be functioning normally. I know it's only a matter of time but I'm hanging on as long as possible to be drug free. Prey I can .
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1 Reaction@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine
@cila, Hi Cila, I have a confession to make .. I have been essentially been "playing" for the past two months .. literally just arrived home tonight .. SO I have been naughty! I have NOT been using my Expander! BUT I now have it on hand .. AND you are motivating me to get moving on it BECAUSE I know on my last breathing test at Mayo my results are SLOWIY declining over the pas 10 years. Now I know it is partly due to the aging process .. BUT I know very well this little gizmo WILL be absolutely excellent for my lungs IF I get my act together and use it several times a day! Thank you for motivating me!
No I have not used the Aerobika .. I tried it a couple of times and didn't really like it .. works though for many people. Hugs! Katherine
@cila, Cila, thanks for jumping in for Diane. It REALLY helps for new people to hear other's stories .. that there truly is a light at the end of the tunnel .. that it does get better! You have such a great attitude .. it just shows through! Hugs to you! Katherine
@megan123, .. Hello Jennifer Welcome to our Forum, so glad you found us! Wow .. 1/3 of your lung capacity .. that is really quite a bit to be told. If I was in your shoes I certainly would be seeking a second opinion! I always say that NOBODY cares about your body as much as you do .. that only YOU can be your OWN best advocate .. so I'd advise you as you have time .. read the past pages of this Forum .. educate yourself .. do your 'due diligence' .. then you can make the best decisions for yourself. If you decide to get that second opinion .. I don't have info for Jewish .. I go to Mayo Clinic in Minnesota .. if you are interested .. here is how:
MAYO CONTACT INFO - TRAVEL INFORMATION TO ROCHESTER MN MAYO CLINIC
1. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
2. Contact Info given to me: MAYO CONTACT NFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
* Minnesota campus for an appointment, here's the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.
For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s
3. Schedule a flight to MSP .. the Minneapolis airport .. OR you can fly right into Rochester MN
4. Rent a hotel room that is walking distance from Mayo Clinic. You can google all these things. I have stayed in hotels in Rochester .. not fancy but close by. You will not need a car.
I would think playing the flute could help the lung capacity .. you might also look at a little gizmo I learned about .. and am giving a try .. read the reviews and see what you think:
It is used by athletics and singers to increase their lung capacity .. I am giving it a shot.
EXERCISE LUNGS
Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com
https://smile.amazon.com/gp/product/B00JWTRA5I/ref=ox_sc_act_title_12?ie=UTF8&psc=1&smid=A35MWDCY6SWWSF
Jennifer, I hope some of this has been helpful. After reading some of the past pages .. if you have any questions please feel free to ask .. we have all been on this journey .. we will be here for you! Sending you a hug in this tough time! Katherine
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