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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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Thank you so much
Dear All, I want to share the email I just sent to Colleen .. her answer was "Self-care is always a priority for mentors. I applaud you for stepping back from Connect to focus on your health. No doubt you will be missed BUT the community is strong and will continue to model the supportive and informative behavior you so expertly demonstrated daily on Connect".
I SO know our community will work together to stay strong until my return. Know that I will be thinking of all of you .. sending LOTS of positive energy and many hugs! Katherine
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Colleen,
I saw my doctor at Mayo Clinic yesterday. I now have a fuller understanding of the status of my lung issues. I will be doing 28 days of Tobramycin inhaled antibiotic twice a day plus a new regime of twice a day inhaled saline solution .. 28 days off of the Tobramycin inhaled antibiotic .. for a total of 3 cycles .. a total of 6 months.
The 2x a day for 28 days of Cipro was not effective for my 3 bacteria of Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi .. if the inhaled Tobramycin is also not effective I have been told the next step for the 3 bacteria is twice a day IV form of an antibiotic called Pip/Taz that must be done twice daily at a local Infusion Center. Frankly this 2x a day IV infusion is such an unacceptable step for me that I have decided to request a Leave of Absence from our wonderful Mayo Connect and REALLY concentrate on my health. I was told that it is imperative that I get back to my long standing .. neglected exercise and yoga routine that I have not had the energy .. nor taken the time to do. With all these new constraints on my time and energy I've felt it is really important that I put my health as a priority .. and I KNOW my Mayo Connect community will understand and support me on this difficult journey .. and decision. If it is ok with you I am going to post this note to you on my Mayo Connect so my Mayo Connect community will understand my thought process. I feel confident they will all jump in to support each other .. and ESPECIALLY watch for newcomers .. because they truly do remember how scary that beginning journey was.
Katherine
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1 ReactionKatherine, We will all be praying for your quick recovery. I just recently began yoga and have been working out (weight training) since March. I was working out last summer but became so sick with MAC that I couldn't breathe well enough to continue until this past March. I can really tell the difference in my breathing since being at the gym. I hope that you find the same healing in your workouts.
I know that this couldn't have been an easy decision for you, and am grateful that you trust us to take care of the new people who join our group. We know the drill and will help the others that come along as well.
Be well and remember you are loved!!
Linda
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2 ReactionsHi @Katenm Katherine, Sounds llike a good idea, these things take alot of our time to fight them and get better, including lots of rest, you are doing the right thing. We will all miss you but lookforward to your healthy return. Looks like they are finally sorting out what meds are for all the differect bacteria, so hopefully your return will be sooner rather then later. Hugs to you and take care.
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2 ReactionsBest of luck to you. This is a wise decision.
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1 ReactionDearest Katherine: I am reminded of the short safety film that everyone must watch when flying. There is a point at which the protocol that must be followed in the event that the air mask is deployed is explained. It states simply that if you are flying with a child, you must put the mask on yourself first in order to be able to help the child. With your kind words and expert advice, you gave us the oxygen that we needed to keep going. Now, it is your turn to help yourself first in order to be able to continue to help others with your much needed hugs and genuine concern for all. You have been our mentor in the past and you now are our role model by showing us the importance of making sure that we are taking care of ourselves so that we may be able to continue to take care of others when we journey back to health. Prayers, love, wishes, and hugs to the infinity go your way today and always.
Words are inadequate but that is all that we have: thank you and be well,
Terry
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2 ReactionsThat was beautifully said Terry and probably echoes the sentiments of all of us. Irene
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1 Reaction<br><br><br><br><br>Yay!!! Stay clean my friend!<br> <br><br>
<br><br><br><br><br>Katherine, I will miss you BIG time! We know that you need to make your <br>health your priority. Thank you for everything, hopefully you will check in <br>periodically even if you only post "I am getting better and better." I hope the <br>toby works as well for you as it did me. Love & Gratitude, Terri M.<br> <br><br>
<br><br><br><br><br>Also wanted to add that I use portable oxygen at the gym. Use a pulse <br>oxometer to moniter your oxygen while exercising, that will show you if you need <br>oxygen while exerting any kind of energy.<br> <br><br>