(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Thanks , I have not had time or actually the strength to google it, Jacksonville?, uh Floridians don’t consider that Fl, we consider that Yankee territory,
I was hoping for Miami, J I have people to stay with and to help with my care and welcome my dog,
in south FL.  So, if anyone knows of a good MAC person in S FL please advise.
 

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@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Try the Cleveland Clinic – has a So FL site. Also try https://www.ntminfo.org/patients/physician-referral-list – I found my doc there…he knows his stuff

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@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Thanks so much for the link, I will try Chapel Hill first, someone said that Duke is not so great, I will ask the guys that I know in pulmonary down the hall
if they know any of these at CH.  But it is good to know about S FL as well, I really don’t know how much longer I will be able to be self- sufficient and will need to be home.  On my way to harass medical records for copies of absolutely everything they have
ever even thought about having …..
 

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Just got told I probably have MAC. I have been a respiratory therapist for 45 years and this is the first I have encountered this disease. So yes I am scared to death while I wait to see an Infectious disease dr. Would never have known I had anything until an episode of coughing up blood as I was working just before Thansksgiving. But it may have been a life saver since they did a CT. I have been treated from asthma and bronchitis almost cont. for a year or more now. My airways were so irritated and I just never seemed to get better or over the cough. No one looked for anything else. Any information and support will be appreciated.

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@colleenyoung

Hi new members, @nanny2aak and @retyured. Welcome to the MAC & Bronchiectasis group.
You’ll notice that I moved your messages to the main discussion thread, so that you can meet many members and benefit from their collective experience and wisdom.

Nanny2aak – would you mind telling us what state or country you live in. This will help members provide guidance on finding doctors and treatment centers.

Retyured – some members have bronchiectasis and MAC, others have one or the other. Can someone help explain “Is bronchiectasis a result of chronic MAC or a contributing factor?”

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retyured……I think our leader Katherine is the past has said that her specialist at Mayo’s has said re which comes first….Mac or bronchiectasis…..it is like which comes first..the chicken or the egg??terrid

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@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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If you’re losing steam fast, recommend you go where you have support…sounds like that’s So FL. Found this doc w/Cleveland Clinic: http://my.clevelandclinic.org/staff/19076-ignacio-echenique

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Hi all. I was wondering if anyone has bought a portable nebulizer that would be suitable for travel. Mine is very bulky and noisy. Thx fondly, Mary Jo

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@cbest

Just got told I probably have MAC. I have been a respiratory therapist for 45 years and this is the first I have encountered this disease. So yes I am scared to death while I wait to see an Infectious disease dr. Would never have known I had anything until an episode of coughing up blood as I was working just before Thansksgiving. But it may have been a life saver since they did a CT. I have been treated from asthma and bronchitis almost cont. for a year or more now. My airways were so irritated and I just never seemed to get better or over the cough. No one looked for anything else. Any information and support will be appreciated.

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@cbest, welcome to Connect and to the MAC group. I moved your message to the main discussion forum so that you can be introduced to many members. People like you who have been surprised to be diagnosed with MAC, and frightened about what is to come. I encourage you to read through the past messages of this forum to get know the people who have willingly shared their journey to help people who are just starting out. You will get plenty of support here, and an incredible wealth of knowledge and experience to get you through this journey.

You’ll read that many health care professionals are under-informed about MAC. So even with your 45 years experience as a respiratory therapist it doesn’t come as a surprise for many here that this is your first encounter with the condition.

There are many members who will answer any questions you might have. Allow me to introduce you to a few. Please meet @tdrell, @chinasmom, @Paula_MAC2007, @jillnc and @kaystrand. Just to name a few.

Cbest, what concerns you the most at this moment? How can we give you assurance and help calm the nerves?

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Great suggestion.

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I am noticing older posts as in years, are there updates from patients who have had MAC and have been treated for over a year? I was diagnosed a year and a half ago and treated for approximately 8 months however, due to liver counts had to quit treatment. My MAC is now registering positive again and I have been referred to CDC for treatment. Is there anyone who has completed the treatment and not had to go back on the medication?

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@maryjo2sell

Hi all. I was wondering if anyone has bought a portable nebulizer that would be suitable for travel. Mine is very bulky and noisy. Thx fondly, Mary Jo

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Mary Jo – I have a Drive Compressor Nebulizer Model PB42367R. It’s somewhat compact. I found a case (not originally made for that) that it fits nicely in along with the nebulizer parts and I carry it separate (with a letter from my doctor) along with my carry on when I fly. It is noisy but I haven’t figured out if there’s a way around that yet. You can also find sterilizer bags on Amazon to sterilize your nebulizer parts in that is also helpful when traveling as they fold up. Linda

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@cbest

Just got told I probably have MAC. I have been a respiratory therapist for 45 years and this is the first I have encountered this disease. So yes I am scared to death while I wait to see an Infectious disease dr. Would never have known I had anything until an episode of coughing up blood as I was working just before Thansksgiving. But it may have been a life saver since they did a CT. I have been treated from asthma and bronchitis almost cont. for a year or more now. My airways were so irritated and I just never seemed to get better or over the cough. No one looked for anything else. Any information and support will be appreciated.

Jump to this post

Welcome to the group cbest. You will find this group very supportive and loving. I joined the group last December, when I was diagnosed. I have bronchiectasis, atypical cystic fibrosis and MAC. I’m 65 yrs old. I started meds for MAC mid-December and am already finding that I can do things now that I had trouble doing a few months ago. I’m still restricted and get short of breath easily, but I’m noticeably improved. The best thing you can do for yourself is read through the many pages of posts from the start. It took me 3 days to get through it all, but I gained more information from this group than I could have ever hoped to get from any medical professionals. I have “filed” away links that are useful and started a Word document where I pasted posts that I wanted to refer back to and that I found helpful. It’s not all going to be stuff you want to retain, but there is some very helpful information. It would be great to have a name so that we can address you by your name. Makes it more personal if you are willing. We will stick with you! You are not alone! Warmly, Linda

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I introduced myself and problem a few weeks ago. I don’t think I had reached the ocurrence yet that I am writing about today. I had a six month visit with my pulmanologist an he ordered a sputum test because I complained of coughing more. Sadly the results was pseudomonas with only tobramycin and furzas recommended. Half way through the tobramycin I thought it was going to kill me. Doctor went immediately to 10 day program with furzas. I have finished that and they are leaving the picu line in case of needed repeat. Help

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@maryjo2sell

Hi all. I was wondering if anyone has bought a portable nebulizer that would be suitable for travel. Mine is very bulky and noisy. Thx fondly, Mary Jo

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Thank you. I will look into it. Someone else had suggested a Phillips Resperonic. It would be great if it could be a little quieter wouldn’t it? Mary Jo

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@maryjo2sell

Hi all. I was wondering if anyone has bought a portable nebulizer that would be suitable for travel. Mine is very bulky and noisy. Thx fondly, Mary Jo

Jump to this post

Hi @maryjo2sell I use an eFlow by Pari, it is very small and you cannot hear it at all, a fantastic machine. It also does not have any tubes for the MAC bugs to breed in, and is easy to wash. it has its own rechargable batteries or you can plug it in, I got it though a trial for Amakacin I think it could be expensive, but worth a look.

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