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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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@windwalker .. Terri, I am so sad for you I could just cry .. it is just so wrong. But what can we do? Just deal with what life hands us .. what is .. IS .. as the kids say 'Sh..t happens'. But what a rip!! BAD doctors .. genetic issues .. doing the best we can at the time .. rough. I'm just glad you are here now among us who will be here for you .. helping you along the way .. supporting you in any way we can. Just wish you didn't have to be .. but we are here. Hugs Katherine
@windwalker .. Terri, so sad, we all do what we think is best at the time .. but so sad that you are not looking at a lung transplant because of the damage done to your lungs. Hugs! Katherine
@irene5 Irene .. "And what we don't know to ask we don't ask!! " THAT IS SO TRUE!!!!!! I love the saying "When we know better .. we do better" .. and now Terri is living with the consequences of a lung transplant because of lousy doctors!! Makes me SOOOO mad! But we can all now be there for @windwalker, Terri as she fights this thing! Hugs, Katherine
@windwalker, Terri, the report I was referring to .. the gene I have .. interesting that BOTH you and I have it .. AND that Dr. Aksamit was interested! :
Alpha-1 Antitrypsin Deficiency The alpha-1 antitrypsin (AAT) protein protects the body, especially fragile lung tissues, from the damaging effects of a powerful enzyme called neutrophil elastase that is released from white blood cells. In AAT deficiency, a genetic mutation reduces levels of the protective protein in the bloodstream. AAT deficiency can lead to chronic obstructive pulmonary disease (COPD), specifically emphysema, and liver disease. Smoking, which can inhibit what little AAT protein an affected person does have, increases the risk of lung disease.
..Hugs! Katherine
@windwalker, Terri, I commend you .. ONLY through research at the "Big Box' medical institutes will there be established a LINK between MAC and genes!! By sharing your journey with MAYO Clinic .. they ABSOLUTELY CAN learn from you for the benefit of ALL of us with MAC .. and all other lung issues .. thank you! Hugs! Katherine
@pamelasc1, Pamela this is REALLY a question for your doctor! I have really been on very different routines .. from monthly when I was on the antibiotics to quarterly .. to now only when I see Dr. Aksamit. Really across the board .. that is why you should direct this to your doctor .. it will really depend on their judgment. Hope this helps! Hugs! Katherine
@jillnc .. Jill, this is ALL about 'due diligence' and being your OWN best advocate! I personally would NOT feel comfortable with 'said only if I felt the symptoms again. ' Personally I would upon ending antibiotic treatment request a 6 month follow up appointment with a sputum culture and Xray .. IF that still showed me as being 'stable' .. then I'd be fine with another 6 month OR maybe even 12 month follow up .. BUT merely ME deciding to play doctor and making treatment decisions!! No way!! These mycobacterium critters are sneaky buggers .. and we do NOT want to end up like Terri needing a lung transplant because doctors did NOT do their 'due diligence' .. SORRY .. but unfortunately we as patients must do our OWN 'due diligence' at times .. it is OUR OWN bodies .. and NOBODY cares about our bodies as much as we do! Sorry if I sound a bit preachy .. but I've just seen too much .. heard too much NOT to be an advocate! Hope I'm not stepping on any toes! Hugs! Katherine
No toes damaged here 🙂 thank you for your opinion and you are correct about not wanting to have a lung transplant. I also have a restrictive lung disease I'm dealing with as well from sjogren's syndrome so my lungs are really taking a hit this last year. Thankfully there are meds available and the MAC ones appear to be working and just started one for the lung disease so we will see. I'm thinking someone will always be looking at my lungs in one way or another. Take care.
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1 Reaction<br><br><br><br><br>I am trying my best to not ever need that transplant. I have made a lot of <br>lifestyle changes. Plus, I try to stay current on medical info too. My journey <br>isn't sad to me anymore, I have gone through the steps and grieved the loss <br>of 2/3 of my lungs, if you met me, you'd have no idea I even had health <br>issues. I still go like a bat out of hell sometimes. (but then I have to <br>rest for two days LOL!)<br> <br><br>
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1 Reaction@windwalker, Terry, LOVE your attitude .. just can't keep that girl down!! Hugs to you! Katherine