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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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:
- 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!
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Hi Fran, you really got some good news today! I am SO glad about the heart issues! Also glad the ID doctor was willing to answer questions to your satisfaction .. that is REALLY a good sign .. feeling confidence in your doctor is an important factor is your healing! In terms of production of sputum .. you might ask the doctor if it is possible to have a "salt induced" sputum culture done. I have had this done at Mayo Clinic. I would breathe salty air through a tube .. and then in time could produce more sputum .. spitting it into a sterile cup that could then be cultured. I just googled it .. more info at: https://www.nationaljewish.org/programs/tests/sputum-induction
In terms of a bronchoscopy .. I have had an endoscopy without any issue but not a bronchoscopy. Maybe others could chime in with their experiences .. I know several have had it done without a problem.
No. I do not believe there is any diagnosis possible from either blood or stool. Sorry. This is just me .. but I joked with my dentist that I loved the "just before falling asleep" feeling that Twilight Sleep Sedation gives me .. told my dentist he should start it in the Waiting Room! Maybe just thinking it through .. thinking about the positives that could come from a diagnosis .. maybe that could help you work through your fear? So often our fear .. if thought through really can be worked through with knowledge .. knowledge is power. I hope this helps you .. you have been so brave so far .. work this through too .. I know you will and can! Sending you a big hug! Katherine
@fransky I just had a bronchcospy done 2 1/2 weeks ago. They do put you out for the procedure. There was an anti nausa med I had to take they said it helped with reflux and then there was a mouth rinse I had to swish around and spit out. I had an IV and I remember being in the prep room and don't even recall them giving me the sleepy juice as I call it. Then I woke up coughing in the recovery room. Only thing that hurt was my throat was sore. I came home and slept for a couple of hours. Didn't eat much that day.They put fluid in my lungs and took it out, took a small brush and rubbed along the sides and they took a small biopsy out of my left lung. I did cough up a small amount of blood for 2 to 3 days, but that is normal they told me. They said my throat might hurt for a day or so but it was like 5 or 6. Think this was due to it was already irritated. Everyone's experience is different and this was mine hoped it help a little to know what happened to me. Good luck. Jill<br><br>
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1 ReactionHi Fran, Just wanted to tell you about my experience with the bronchoscopy. I had no sputum to cough up but my lungs didn't look so good in the CT scan so I had to have one and that's how they found my MAC. It was not a problem for me at all. They just put me out and I woke up and it was over. I think it's probably a necessary thing in our cases. It'll be ok. Nan
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1 ReactionFran my bronchoscope in July was similar to the others describing theirs. Afterwards they did a routine chest X-ray while you lie in bed...just routine! My coughing up of blood after...just traces ...was minimal...throat slightly sore for awhile never interfered with eating or drinking. It was on a Wednesday and Saturday I flew to another state and a 10 day active trip I do annually...a film festival where I volunteer usher and buy tickets to films all while staying with a girl friend etc. Absolutely no interference...I
I have NO memory of what happened during procedure...it was outpatient at local hospital...someone needs to drive you home...you cannot drive for 24 hours...
My sputum was negative prior...it was the "washing" from the lung that told us all why I had been coughing for 2 years...it grew the MAC...That is why Bronchosope and CATs are gold standards in MAC diagnosis ..terriD
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1 ReactionThanks for sharing your experience and proving that active lifestyles - travel etc. - are still possible. Have a great weekend!
Thanks for sharing this information. I am not scheduled now but imagine I will be in about a month.
I am 64 years old and had my first case of night sweats this Monday. It was on waking up. I was dripping wet from my face and neck. I was just finishing strong antibiotics for a cold. I did look on line and found that night sweats are on a list of MAC- related symptoms. I am really taking it easy which seems to help.
Jill, REALLY good info .. thanks for the excellent reply! Hugs, Katherine
Fran, Nan and Jill, thanks to all for the good info to Kathryn .. I'm sure by sharing your experiences so well .. it will help immeasurably to reassure her in going forward with the Bronchoscopy. Through sharing our experiences we help each other! Hugs to all! Katherine
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1 ReactionKathryn, yep .. welcome to the crowd! We all have them to varying degrees. No fun but it could be worse! All I can say is to do your "Gratitudes" .. that things could be worse! Hugs! Katherine