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.

terryb1 | @128128terry11t | Jun 28, 2017
In reply to @katemn "Dear All, I am finding my Aerobika really works great hooked up to my saline solution..." + (show)
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some "nasty" stuff with the Aerobika. THEN when reading " Member advice from 2017 Conference: "They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers." .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. 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

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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I forgot to mention that I have been rinsing my aerobika and nebulizer in boiled water (boiling for 10 minutes) instead of distilled. I will ask about that as well. Hope that that is acceptable. Terry

REPLY
tdrell | @tdrell | Jun 28, 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

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Windwalker....yes it is interesting re 3 of us being Alpha -one carriers.I need to get up the energy and timing to tell my two adult children about being tested. They both have had a child already.
During the year i dont have to return to NJH i am working on my GERD...sorta my weight (overweight) ...getting used to new CPAP addition...despise it but being a "good" patient was 100% compliant ( cannot believe how they can track us by satellite aka Big Brother)

Today I began process to get oriented to volunteer at local in house Hospice....a few hours a month only as volunteer...not as nurse . Need distraction from ailing body parts...2 hour shifts are good.tdrell

REPLY
jentaylor | @jentaylor | Jun 29, 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, I appreciate your way at looking at the transition from who we were while working to who we are now...with an altered identity (not rating it bad or good). But feeling good about who we are now is important & it's something I struggle with. But I find myself feeling better & better all the time after reading through your posts. You all are giving me so much hope & inspiration! I'm so glad I found you, all! Best, Jen 🙂

REPLY
jentaylor | @jentaylor | Jun 29, 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

@katemn Awesome! Thanks for sharing, Katherine!!!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 29, 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

 
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 29, 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

@jentaylor We
are glad you found us too! You have helped us as well. You have brought up
issues that have not been in the past. i.e. identity after forced
retirement.  -Terri M.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 29, 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 Good
for you Terri (volunteering) Hospice is so important. I swear, only angels work
there. I am thinking of becoming active with the Alpha -1 org again. I think
adding this info about carriers would be helpful. Don&apos;t know if you saw an
earlier post from me about me speaking to an Alpha-1 rep from NJH that was at
the conference. Anyhow, I did ask her about carriers of A-1 being targets for
serious lung issues. She said &apos;absolutely there can be a corrolation&apos;. She sees
it a lot. The problem is, that like MAC, they are still trying to learn about
that disease. Their&apos;s is complicated due to genetics and research. You can order
the test kits online at http://www.alpha-one.org It is a simple pin
prick of blood put on a card and mailed back. They are free. That is if your
family is interested in doing it. Alpha-1 is another under-diagnosed
condition. It&apos;s only been in the last ten years that the word was put out for
all pulmonologists to test for this when patients have a chronic cough or
emphazema/copd like symptoms.  - Terri
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 29, 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

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@katemn,
Hi Katherine. Yes! Please give a report on the Alpha-1 visit in July. 
-Hugs!
 

REPLY
unicorn | @unicorn | Jun 29, 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

I'm seeing my doc end of August, at Mass General in Boston they have a whole unit dedicated to this disease. I will ask him about alpha 1 gene, pseudomonas, 500 mg cipro, water temp 130 degrees, Nurses and teaches more susceptible, and all the other grand info I have learned from this site!! Then will report back. xoxo

REPLY
Katherine, Alumni Mentor | @katemn | Jun 29, 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 Mass General in Boston has a whole unit dedicated to this disease. is GOOD information for our Connect .. thank you for sharing that! Do you have a particular doctor that you think is REALLY sharp?! Keep us posted! Hugs! Katherine

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