1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

Jump to this post

@ling123, Ling that is really smart .. I know that I also had mucus but no doctor told me about "lung clearance" .. Aerobika .. Saline Inhalation .. frankly I learned all those things here on our wonderful Forum .. AFTER my mucus became a breeding ground for THREE MORE bacteria for which I am now being treated for SIX month with an inhaled antibiotic Tobramycin .. PLUS now a THIRD mycobacterium has shown up on my latest sputum culture report that has never been there since I was diagnosed in 2007. Frankly it kind of ticks me off .. I intellectually "knew" that mucus became a "breeding ground" for further problems .. but it was SO darn easy just to go on with my merry life and not bother with the hassle of DAILY lung clearance and DAILY saline inhalation .. Ok .. well now I am "paying the Piper" so to speak since now I have THREE mycobacterium and THREE bacteria in my lungs and not a ONE of the darn things can be "cured" .. just "stabilized" .. SO just a word to all those of you that don't want to be bothered .. I didn't either .. BUT just thought I'd impart my modicum of wisdom! Hugs to all!

REPLY
Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

@virtuous69, hope that help! Hugs! Katherine
Mycobacterium avium-intracellulare is MAI
Mycobacterium avium complex is MAC

REPLY
Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@unicorn .. Christa that is great information to add to our Forum Main pages and to my File Cabinet .. thank you! Hugs! Katherine

REPLY
ling123 | @ling123 | Jul 5, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

Jump to this post

@katemn Katherine, good point about being diligent with lung clearing. This is one of the things that I'm planning on discussing with my doctor when I see him in September. To find out what he would recommend me using to help me accomplish the above. I do try to cough up as much mucus as I can throughout the day, especially in the morning. But you never know if that is enough. If there is anything that can help with that effort and do a better job of it, I must get it.

REPLY
Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@windwalker, Terri I would NOT be a bit surprised if the decrease had something to do with all your wonderful exercise program! You encourage all of us! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

Jump to this post

@ling123, Ling, family and friends kind of don't "get" the number of hours I spend being the Volunteer Mentor of our Connect .. BUT what I keep reminding them is that I receive just as much as I give! The below is just ONE example!! I find it the BEST help in getting up mucus .. much better than a device recommended by my doctor .. the Acapella with did ZERO for me. The Aerobika I learned about from our MEMBERS!! If I was you .. forget asking your doctor .. it is YOUR body .. It WORKS!! Below is the info! Hope it helps you .. but do ask him about the Saline Inhalation. Hugs! Katherine

From My File Cabinet:

Members @decosmo and @maryjo2sell who have given great info about the Aerobika in the past.*Aerobika. I highly recommend it. I love mine. I have two. They vibrate well to loosen the stuff and they are so much easier than an Acapella to clean. (I use a bit of antibacterial dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water. 2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap. ) I have had mine for at least 2 years.

@katemn .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.
AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

REPLY
Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

Jump to this post

@irene5, Irene, so interesting "The change in my role from super mom and teacher to “this” has been especially challenging for my family." .. I think that has been SO true for many of us .. AND difficult for our families. So many of us NEVER let our vulnerable sides show .. ALWAYS the Super Woman .. AND I think it is a bit frightening to those around us .. frankly they do NOT want that change .. they prefer we ALWAYS be who we always were. I JUST had that conversation with my 22 year old beloved granddaughter visiting from the East Coast after college graduation last night. We discussed her childhood .. my vital role in who she feels she is today as a strong woman .. BUT also with my aging and her fear of it .. her fear of my death .. her fear that I will not always be here. We discussed the "cycle of life" but truthfully she was NOT into that .. you Irene are REALLY dealing with this aspect with the numbers in your family. I can truly relate to the emotional aspects of this journey you are on. Keep coming back .. we are here for you on the tough journey. Hugs to you! Katherine

REPLY
lindam272 | @lindam272 | Jul 5, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

Jump to this post

Katherine, I've had my Aerobic for about 18 months now and when I was looking through the booklet, it mentioned that it should be replaced every 6 months. I have a message in to my resp. therapist about that. Will let you know what she recommends. Linda M

REPLY
Katherine, Alumni Mentor | @katemn | Jul 5, 2017

@lindam272 thanks Linda .. that would be good info because SO frequently replacement is recommended JUST to make more money! So you should tell your therapist JUST how well your Aerobika is functioning versus how it felt in the beginning ... still getting the mucus up?? Hugs! Katherine

REPLY
irene5 Irene Estes | @irene5 | Jul 5, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

Jump to this post

Thank you Katherine! Yes we have all had "the talk." Interestingly my Chinese daughters are having more anxiety about it all than our biological children. We adopted them all as  older children (ages 6 to 12) except for one. They hold on for dear life to this "family" because they know the flip side of that. You described our role change perfectly. It&apos;s all in the attitude right! Hugs back at ya! 

REPLY
View MoreView Less
Please sign in or register to post a reply.