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 24, 2017
In reply to @contentandwell "@windwalker, Terri, I had my transplant in September 2016 - blessedly sooner than anyone anticipated. I..." + (show)
@contentandwell

@windwalker, Terri, I had my transplant in September 2016 - blessedly sooner than anyone anticipated. I was put on the list in the summer of 2015 but my MELD was still under 30 and in Boston transplants under MELD 30 are not common. I'm sure my blood type, B, helped me, plus in the 6 weeks or so prior to transplant my condition suffered a lot. As soon as cirrhosis was diagnosed I was told to not drink alcohol AT ALL.
I was surprised at the dark roast too. I was buying the light roast because I thought it would be lower in acid. My doctor didn't tell me that, a coffee web site did but I assume it must be correct.
JK

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@contentandwell Wow
girl! So you are under a year in your post transplant journey. I occasionally
attend a lung transplant group, in fact I went last week. I met a 13 yr
survivor! That is a long time for lungs. I go to those meetings because my drs
are forecasting that I may need a transplant in the future. It helped me to get
over the terror of it.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 24, 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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@jentaylor Jen,
there was a booth at the convention this past Spring that was demonstrating the
vests. They are mainly used by CF patients. My Dr mentioned it to me last week
that I might consider getting one. He mentioned that they are super expensive,
but that insurance may cover it. Then he said, but you are sounding pretty good
lately and maybe don&apos;t need one yet. He just wanted me to be aware that it
existed in case I ever need it. Hang onto yours in case you ever need it in the
future. Are you sure it wasn&apos;t doing anything for you? If you are coughing stuff
up now, the vest helps shake that phlegm loose from the little crevasses down in
your lungs.
 

REPLY
cila | @cila | Jun 24, 2017

How can you produce sputum if you don't caught? I'm supposed to get sputum when I go to the Dr. but I can't get any. Any suggestion? Please! Thanks.

REPLY
3 replies
unicorn | @unicorn | Jun 24, 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

Haha, who cares if we're old, we've still got the beat!!

REPLY
luvocean | @luvocean | Jun 24, 2017
In reply to @cila "How can you produce sputum if you don't caught? I'm supposed to get sputum when I..." + (show)
@cila

How can you produce sputum if you don't caught? I'm supposed to get sputum when I go to the Dr. but I can't get any. Any suggestion? Please! Thanks.

Jump to this post

My dr.sends me to the pilmonary dept. at the hospital. They give me a nebulizer with saline solution which brings up sputum deep in the lungs

REPLY
unicorn | @unicorn | Jun 24, 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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Hi Jo Ann, I have gerd also, but I just kept working at it, and now pretty good. I stopped eating bad combinations of food, cut way down on fat (the worst) never eat dinner, and lay on my left side, so the stomach just slips back down into place. Also I sleep on like 3 or 4 pillows. I stopped taking all the meds because they did nothing! I just worked on low fat, and walking after meals. I find that if I nap after a meal it also stops the gerd. It got really bad at first, had to have bronchoscopy, small hiatal hernia. But now it is much better. The biggest improvement is laying on left side. Doc didn't tell me that, another gerd sufferer did!

REPLY
JK | @contentandwell | Jun 24, 2017

@windwalker, yep under a year and truly better in about two months so the family and I got to have a great and thankful Christmas with my son, daughter, and daughter's fiance totally cooking dinner, they were so grateful that I was still her.
I know nothing about lung transplants since I have never known anyone to whom that has been a necessity. Is it less common than liver transplants? The last number I heard for liver was that there were about 17,000 and about 25 - 30% won't make it due to lack of donors. I have encouraged every one I know to be an organ donor. It is just the right thing to do unless it is against your religious beliefs. Why not? I am sure there are many people who would go on the list to be donors if they were more aware of the necessity. I think the other thing is that many procrastinate and don't get on. I have mentioned it to my son and daughter. Turns out she has been a registered donor for a long time. My son said he would but he never has said that he had. He is a true procrastinator.
JK

REPLY
1 reply
jentaylor | @jentaylor | Jun 25, 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 Terri M, that job sounds so interesting & very cool! Thanks for "getting" it.

REPLY
jentaylor | @jentaylor | Jun 25, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

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

Thank you, Kathy

Jump to this post

@windwalker I have noticed that there are a lot of nurses (along with a lot of people with RA)... hmmm... maybe already poor immune systems then picked up bugs here & there from patients?? Freaquent infections damaged the bronchials which made them more susceptible to capturing MAC in our sticky breeding ground/lungs. It doesn't really add up though since you can't catch MAC from another person, so not from the parents... it's puzzling... but very interesting... good observation!

I worked in the Infectious Disease unit in inner city Baltimore at University of Maryland for a traveling nurse assignment. Always wondered if I "caught" something while there...but it doesn't really make sense, so I probably didn't. I also did nursing in Kenya in VERY primitive, remote settings. I, along with dr's, wonder if I possibly picked something up there that we don't really look for or recognize here in the US. But it's unlikely...ID dr doubts it. ~Jen

REPLY
jentaylor | @jentaylor | Jun 25, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

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

Thank you, Kathy

Jump to this post

@windwalker That's a good idea Terri.., it doesn't hurt to get it out & try it again! I think I will try it tomorrow & see what happens! Thanks for the idea!

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