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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 27, 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 Great
advice Crista.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 27, 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

@boomerexpert LOVE WHAT YOU SAID!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 27, 2017
In reply to @katemn "Dear All, maybe this is against the rules .. BUT I just got this from a..." + (show)
@katemn

Dear All, maybe this is against the rules .. BUT I just got this from a friend in Australia .. thought it was so uplifting I thought I'd share it .. if I get reprimanded .. promise not to do it again! Hugs to all!

THE BACK NINE

I FIRST STARTED READING THIS EMAIL & WAS READING FAST UNTIL I REACHED THE THIRD SENTENCE. I STOPPED AND STARTED OVER READING SLOWER AND THINKING ABOUT EVERY WORD. THIS EMAIL IS VERY THOUGHT PROVOKING. MAKES YOU STOP AND THINK.
READ SLOWLY!

AND THEN IT IS WINTER

You know ... Time has a way of moving quickly and catching you unaware of the passing years. It seems just yesterday that I was young, just married and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams.

But, here it is... The back nine of my life and it catches me by surprise...How did I get here so fast? Where did the years go and where did my youth go?

I remember well seeing older people through the years and thinking that those older people were years away from me and that I was only on the first hole and the back nine was so far off that I could not fathom it or imagine fully what it would be like.

But, here it is...my friends are retired and getting grey...they move slower and I see an older person now. Some are in better and some worse shape than me...but, I see the great change....Not like the ones that I remember who were young and vibrant...but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd become.

Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit!

And so...now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!! But, at least I know, that though I'm on the back nine, and I'm not sure how long it will last...this I know, that when it's over on this earth...it's over. A new adventure will begin! Yes, I have regrets. There are things I wish I hadn't done...things I should have done, but indeed, there are many things I'm happy to have done. It's all in a lifetime.

NOTE: So, if you're not on the back nine yet...let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life please do it quickly! Don't put things off too long!! Life goes by quickly. So, do what you can today, as you can never be sure whether you're on the back nine or not!

You have no promise that you will see all the seasons of your life....so, live for today and say all the things that you want your loved ones to remember...and hope that they appreciate and love you for all the things that you have done for them in all the years past!!

"Life" is a gift to you. The way you live your life is your gift to those who come after. Make it a fantastic one. LIVE IT WELL! ENJOY TODAY! DO SOMETHING FUN! BE HAPPY ! HAVE A GREAT DAY Remember "It is health that is real wealth and not pieces of gold and silver.

LASTLY, CONSIDER THIS:
~Your kids are becoming you......but your grandchildren are perfect!
~Going out is good.. Coming home is better!
~You forget names.... But it's OK because some people forgot they even knew you!!!
~You realize you're never going to be really good at anything like golf.
~The things you used to care to do, you aren't as interested in anymore, but you really don't care that you aren't as interested.
~You sleep better on a lounge chair with the TV 'ON' than in bed. It's called "pre-sleep".
~You miss the days when everything worked with just an "ON" and "OFF" switch..
~You tend to use more 4 letter words ... "what?"..."when?"... ???
~You notice everything they sell in stores is "sleeveless"?!!!
~What used to be freckles are now liver spots.
~Everybody whispers.
~You have 3 sizes of clothes in your closet.... 2 of which you will never wear.

~~~But Old is good in some things: Old Songs, Old movies, and best of all, OLD FRIENDS!!

Stay well, "OLD FRIEND!" Send this on to other "Old Friends!" and let them laugh in AGREEMENT!!! It's Not What You Gather, But What You Scatter That Tells What Kind Of Life You Have Lived.

TODAY IS THE OLDEST YOU'VE EVER BEEN; YET THE YOUNGEST YOU'LL EVER BE, SO ENJOY THIS DAY WHILE IT LASTS

Jump to this post

@irene5 Yep!
That is why it is called &apos;present&apos;.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 27, 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

 @tdrell She really could!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 27, 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

@tdrell Terri, I was up until 1 a.m. last night watching National Jewish
videos, and others. It has been common belief that NTM is not communicable, but
they are starting to have doubts about that now.
 

REPLY
tdrell | @tdrell | Jun 27, 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

Jkiemen...NJH told me in January that CAT scan showed no bronchiectasis or active NTM infection. The 3 sputums done there at 8 weeks showed no MAC. Based on long history of. GERD , and an esophagram that showed food stuck in my esophagus...slow motility.
Their conclusion was that I Was silently refuxing water etc into my lungs during day and at night.and since The tap water here in SE Wisconsin contains NTM hence i aspirated it into my lungs ......and it was seen upon bronchoscopy.
I was told at NJH to follow GERD Precautions....
Limiting fluids during day....especially in evening ....no more than 2-3 ounces with dinner....,no eating or drinking 2-3 hours prior to sleep....sleep with
head of bed elevated 40 degrees...never sleep on right side or back....
The list of food not to eat...no fried foods...no caffeine or citrus....no peppermint or spearmint...etc
As far as water.....i buy bottles of spring water....thats what i drink at home....iwhen my freezer has room...i will make spring water ice cubes...when out...i drink regular water
Tdrell

REPLY
imeehaigt | @imeehaigt | Jun 27, 2017

Hi Everyone! It's been a while since I posted on this forum. Just a brief history on what I shared before I have a bronchaectasis and have been battling for this since 1997. I was also diagnosed with NTM but was mistreated. I never stopped producing sticky phleghm for years now especially early morning . As advised by @katemn I always do deep breathing and make sure to expel sputum everyday as this is ground for bacteria. Last january I was relocated in northern part of the philippines which is not polluted so I am breathing fresh air. Just last month my friend asked me to go on jogging and we did it for less than an hour only and I noticed that I stopped coughing and stopped producing phlegm. I beleive that this stopped because if you do jogging you will breath rapidly and this will clean your lungs. Since I dont have time to jog everyday our office is located at the 5th floor so I decided to Take the stairs everyday and do deep breathing exercise everyday before I go to bed and as soon as I wake up in the morning. Ive been doing this for a month now and thank God its been a month that I dont have phlegm. Prior to this ive been taking 1 gloves of fresh garlic everyday especially whenever I feel that im going to have flu or sore throught. I Stopped taking garlic but continued doing deep breathing excercise. Hope this helps and I hope everyone is doing well.

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 27, 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

@irene5 Very
rude indeed!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 27, 2017
In reply to @imeehaigt "Hi Everyone! It's been a while since I posted on this forum. Just a brief history..." + (show)
@imeehaigt

Hi Everyone! It's been a while since I posted on this forum. Just a brief history on what I shared before I have a bronchaectasis and have been battling for this since 1997. I was also diagnosed with NTM but was mistreated. I never stopped producing sticky phleghm for years now especially early morning . As advised by @katemn I always do deep breathing and make sure to expel sputum everyday as this is ground for bacteria. Last january I was relocated in northern part of the philippines which is not polluted so I am breathing fresh air. Just last month my friend asked me to go on jogging and we did it for less than an hour only and I noticed that I stopped coughing and stopped producing phlegm. I beleive that this stopped because if you do jogging you will breath rapidly and this will clean your lungs. Since I dont have time to jog everyday our office is located at the 5th floor so I decided to Take the stairs everyday and do deep breathing exercise everyday before I go to bed and as soon as I wake up in the morning. Ive been doing this for a month now and thank God its been a month that I dont have phlegm. Prior to this ive been taking 1 gloves of fresh garlic everyday especially whenever I feel that im going to have flu or sore throught. I Stopped taking garlic but continued doing deep breathing excercise. Hope this helps and I hope everyone is doing well.

Jump to this post

@imeehaigt So
glad to hear you have a good handle on your health. I have to agree, exercise is
key. I am doing so much better since I joined an aerobic class six months ago. I
wish you continued success! - Terri M.
 

REPLY
unicorn | @unicorn | Jun 27, 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

Oh no! bad news

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