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 | Jun 26, 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

Colleen, YEAH! I was prepared for stoning .. had my armour on and everything! Glad you liked it! Sent by my GREAT buddy .. she and her husband of 86 travel ALL over .. they are absolutely my role models! She is the funniest thing .. met them on one trip and was entranced forever! Hugs to all! Katherine

REPLY
irene5 Irene Estes | @irene5 | Jun 26, 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

Yes! Yesterday is gone. Tomorrow is not here yet. All we have is today - the present, and it is, indeed, a gift!

REPLY
Katherine, Alumni Mentor | @katemn | Jun 26, 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, Jen, I can ONLY speak from my personal experience .. but it did ZERO for me. But that was when I was dealing only with MAC. I have found the Aerobika MUCH more effective in even less time now with the 3 bacteria. Just me. Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 26, 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

Jump to this post

@128128terry11t, Terry .. that would be GREAT to get a definitive answer!! Because I have been hooking up my saline to a nebulizer .. then to my Aerobika twice a day .. intend to do it for the rest of my life based on the wonderful success @windwalker Terri has had in keeping her lungs so clear! With her 44% lung capacity .. she is someone to listen to! I would be very interested in the reason "“recommended disinfecting method- electronic steam sterilizer for baby bottles” — THAT METHOD WAS CROSSED OUT. " The reason I wonder: one I spoke to "admitted" the ONLY reason they did NOT list ELECTRIC steam sterilizer for baby bottles was BECAUSE they just had NEVER TESTED for that method .. so could not list it!! Lousy reason in my mind!

BUT as I closely looked at my Aerobika I see perhaps "fragile" rubber? parts inside?? That might react to heat/steam? BUT logically if it would react to the steam in a sterilizer for baby bottles .. doesn't it logically apply to steam in microwave steam bag .. OR heat from boiling?? Now I'm not a scientist .. just logical. So PLEASE kind of grill them on: logic .. OR they have not BOTHERED to test the electric sterilizer for baby bottles such as: The First Years Power of Steam Electric Steam Sterilizer https://smile.amazon.com/gp/product/B002WN2B6O/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

( I called Aerobika Customer Service directly...Monaghan Medical (800) 833-9653.. and told them my cleaning method .. their only concern was that I rinse well the antibacterial dish soap after soaking. BUT they are NOT experts on MAC or Bronchiectasis. https://www.monaghanmed.com/patients-education. They finally admitted their ONLY cleaning research was based on boiling SO cannot comment on any cleaning method other than boiling .. baby bottle sterilizing? LIABILITY!!)

SO, please do get an answer: sterilize one/two times a day .. ok to use a top shelf of an electric sterilizer for baby bottles .. if using the Aerobika with Saline changes the answer .. MUST use distilled water to rinse .. SUCH a LOT OF WATER!! ?? Thanks for your help! Hugs to all! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 26, 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

Jump to this post

@128128terry11t, Terry .. that would be GREAT to get a definitive answer!! Because I have been hooking up my saline to a nebulizer .. then to my Aerobika twice a day .. intend to do it for the rest of my life based on the wonderful success @windwalker Terri has had in keeping her lungs so clear! With her 44% lung capacity .. she is someone to listen to! I would be very interested in the reason "“recommended disinfecting method- electronic steam sterilizer for baby bottles” — THAT METHOD WAS CROSSED OUT. " The reason I wonder: one manufacturer I spoke to "admitted" the ONLY reason they did NOT list ELECTRIC steam sterilizer for baby bottles was BECAUSE they just had NEVER TESTED for that method .. so could not list it!! Lousy reason in my mind!

BUT as I closely looked at my Aerobika I see perhaps "fragile" rubber? parts inside?? That might react to heat/steam? BUT logically if it would react to the steam in a sterilizer for baby bottles .. doesn't it logically apply to steam in microwave steam bag .. OR heat from boiling?? Now I'm not a scientist .. just logical. So PLEASE kind of grill them on: logic .. OR they have not BOTHERED to test the electric sterilizer for baby bottles such as: The First Years Power of Steam Electric Steam Sterilizer https://smile.amazon.com/gp/product/B002WN2B6O/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

( I called Aerobika Customer Service directly...Monaghan Medical (800) 833-9653.. and told them my cleaning method .. their only concern was that I rinse well the antibacterial dish soap after soaking. BUT they are NOT experts on MAC or Bronchiectasis. https://www.monaghanmed.com/patients-education. They finally admitted their ONLY cleaning research was based on boiling SO cannot comment on any cleaning method other than boiling .. baby bottle sterilizing? LIABILITY!!)

SO, please do get an answer: sterilize one/two times a day/ or weekly .. ok to use a top shelf of an electric sterilizer for baby bottles to sterilize .. same answer if use with Saline .. MUST use distilled water to rinse .. A LOT of water!!?? Thanks for your help! Hugs to all! Katherine

REPLY
terryb1 | @128128terry11t | Jun 26, 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

Jump to this post

Katherine: I am on it!! I have stopped using distilled water to rinse my aerobika and nebulizer after soaking in plain, warm sudsy water. I now rinse in water that I have boiled the day before (just leave it to sit and cool down ). It looked like I was running a moonshine still in my home with all the distilled water that I was purchasing from grocery store! Terry

REPLY
unicorn | @unicorn | Jun 26, 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

Jump to this post

moonshine hahahahaha

REPLY
tdrell | @tdrell | Jun 26, 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

Jen....you could write a book about your experiences in AFrica.WOW! Tdrell

REPLY
Katherine, Alumni Mentor | @katemn | Jun 26, 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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@128128terry11t, Terry, to be honest .. I am ONLY using VERY hot (we live in a condo) water from the faucet to rinse after using antibacterial soap .. PROBABLY a BAD idea! Was just thinking .. I have that special shower faucet .. 0.2 micron .. I should AT LEAST be using that water .. hmmm you've got me thinking! Would you mind asking about the 0.2 micron shower head water. Hate to burden you but would save me a real hassle! Thanks much! Katherine

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tdrell | @tdrell | Jun 26, 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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Irene5...I wish I had a tiny bit of artist ability in order to draw an "Unhappy Liver." Too funny!
I would also like to comment to the discussion re did our work/professions have any linkage to our current situations ....The lung/NTM ailment.Being teachers or nurses ( Or both).
Guess I recall that in the 60'S , the options for women consisted of Teaching, , Nursing, or Secretarial, or Housewife
.And if we did a survey of all of the site's members, we would have no connection to choice of job and infections with NTM.
And as far as the scientists know, NTM is not caught between humans....not communicable.tdrell

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