(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.

jentaylor | @jentaylor | 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)

@windwalker Hi Terri M, I similarity was encouraged to stop working as an RN & go on disability due to my poor lung condition 24/7 oxygen dependence & immunodefiency. To this day, there's no way I could keep a job due to the simple reasons of being "sick" all the time & getting too much exposure to others, putting my health at jeopardy.

I miss my identity as a "nurse" & my feelings of purpose, in that sense. I also miss making my brain work, the brain stimulation. I have difficulty finding ways to challenge myself mentally. I either struggle with too much of it & find it too difficult which makes me sad & mad & all of that, because my memory & brain functions have been altered over the past 10 years. I want some mental stimulation though but find it difficult to find just the right amount. My nursing "critical thinking skills" are no longer easily retrieved from my brain!!! Grr!!!

I was approved for disability without any difficulty (still a LOT of paperwork & documentation). Since than, I have lessened my dependency for oxygen (miraculously, unbegntost to my physicians) & I have continued, without difficulty, to remain on disability. I must say that I also really miss the income I earned as a RN! That party really, really sucks!!! Things could be a lot worse then being broke, right?!! At least I'm alive & doing better than I have been in the past...and I'm able to be a mom to my Emma & wife to my husband & a daughter to my mom! ~Jen 🙂

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)

@jkiemen Hi
There! Do you have a first name? Most of us here on this forum also suffer with
GERD. Mine was so bad that my esophagus burned most of the time and was
borderline turning into Barrett's Syndrome. The main treatment for it is taking
meds like previcid an hour before eating your dinner. Don't eat or drink
anything three hours prior to bedtime. They even suggest having the head
of your bed lifted 6". That way gravity keeps the contents of your stomach
going downward instead of up your throat. Some doctors believe that we may have
contracted MAC by inhaling water that we have drank before bed or even stomach
contents containing MAC in the gut. Avoid high acid foods and alcohol. For
sure; acid reflux can pose a real threat by eroding your esophagus causing a
condition called Barrett's Syndrone. That syndrome can lead to throat cancer.
That happened to a friend of mine who passed away two yrs ago. You can learn
plenty by Googling 'GERD' and "MAC and ACID REFLUX'. I hope this has helped. -
Terri M.

JK | @contentandwell | 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)

@unicorn I do a whole hour at it generally but if don't go to class I pretty much do a full hour. I do it non-stop also. I like to be social but not when I am trying to do my thing there. Some people will get very chatty and I don't want to be rude but I want to get on with it. I really do find the music helps me to do it more spiritedly. The best tunes in my playlist for that are Shakira - "She Wolf", Ricky Martin - "Livin' la vida" loca", Smooth -- Santana and Shakira - "these hips don't lie". I know, sounds weird for an old lady but my daughter turned me on to Shakira. She likes her Spanish albums because she is fluent in Spanish.
These are not near to being my favorite artists but the beat in these songs really gets you going.
JK

jentaylor | @jentaylor | 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)

@windwalker Hi again, Terri M & all,

I'm cleaning in preperation for my in-laws coming & cleaning is exhausting for me so I'm doing just a little bit throughout the day over a couple of weeks. I came upon a quote I previously had next to my couch (wear I am at much of the day)...Thought I'd share it:

"If you want to be happy...you have to be happy in purpose. When you wake up, you can't just wait to see what kind of day you'll have. You have to decide what kind of day you'll have." --Joel Osteen. I

don't read much by him but happened to see this hanging up somewhere & I took a picture of it so I wouldn't forget it...then printed it out to be reminded of this daily.

Terri M, I LOVE the part of your post where you said you "will NOT accept that you are dying" or that you won't live to reach a certain age!!!!! I'm going to start saying this to myself everyday, starting TODAY!!!!!!! THANK YOU!!!!!!!

Much love to you, Jen 🙂

JK | @contentandwell | 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)

@windwalker Terri, I too have Barrett's Esophagus. I never had gerd, just hoarseness and it took the PCP I was going to then a long time to recommend a second opinion. I take omeprazole (prilosec) for it.
My doctor also told me I should raise the pillow and if we could afford it, to get one of those beds with adjustments for both sides. Not only are those expensive but the way our stairs and hall are I am not sure we could get a K into the bedroom and there are very few of those that come in Q. So, my husband put blocks under the headboard end of the bed. Sleeping on two pillows gives me a stiff neck.
I am also supposed to avoid high acids like citrus, tomatoes, and I don't recall if he mentioned alcohol but now due to having had cirrhosis and a liver transplant I can't drink any alcohol anyway even though my cirrhosis was from fatty liver not alcohol.
Coffee is also restricted but I asked him last year if I could drink low-acid coffee or decaf and he said my Barrett's was not bad and if I wanted a couple of cups a day just drink "the good stuff". He also said that the chance of my getting cancer from it is very, very low. Overall that is true anyway. Not too many people do progress to cancer from Barrett's.
That doctor is also at MGH and apparently well known for working with Barrett's. Speaking of coffee, I researched it to find out about low-acid at one point and it turns out that dark roast has less acid because the extra roasting burns more off. I found that interesting.
JK

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)

@contentandwell
Hi there! That is interesting about the dark roast coffee. May have to
make the switch. I take Prilosec too. How long ago did you have your
transplant? Terri M.

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)

@jentaylor
Hi Jen, I really liked the Olsteen
quote. Thanks for sharing it.

JK | @contentandwell | Jun 24, 2017

@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

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)

@jentaylor,
Hey, I totally get where you are coming from in grieving the loss of income and
mental stimulation. I opened a Scottrade account and started growing money. I
charted and followed stocks like crazy. I amassed a small fortune by doing so.
The portfolio now gives me additional income every month. I used to be an
electrical systems designer. I drafted the plans for fire alarm systems in
hotels, gov't buildings and some rides at Busch Gardens. That job also included
sound systems for courtrooms and security cameras. I enjoyed that job, but any
time someone would come in my office and sneeze, guess what, I would
catch it as a cold, then it would become bronchitis, then it would morph into
pneumonia. My boss grew weary of my sick days as did I. Then, I would drag
myself to work many times, very sick. Even with MAC infection for fear of being
fired. I finally had to throw in the towel. - Terri M.

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)

@jentaylor
I am noticing a lot of people on our forum were nurses. Have you noticed
that?

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