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:
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
When they scaped and brushed the area its shows no cancer
Liked by Terri Martin, Volunteer Mentor
@mariierod123 This will be my second Biopsy. The first was in October of 2015. I don't want to do it either. But I think I need to know exactly what is going on with that area. They are sending the sample for culture to Jewish National.
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@mariierod123 The biopsy grew MAI and there was granuloma which is kind of like tissue that is engulfing the bacteria and kind of scarring. They use IV sedation to do it. It was a little sore afterwards.
Liked by Terri Martin, Volunteer Mentor
@tdrell I had a robotic lobectomy. It’s healing nicely! I’m 10-11 days out and have been doing some laundry, taking short walks, moving about just fine. I have some minor pain still, but just taking Tylenol and muscle relaxer. My Pulmonologist said 2-3 months on medication. I don’t know if they will do cultures to determine when to stop. I may look into NJH for follow up.
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@angiejohnson It sounds like you are doing really well. I really wish you the best and able to get off the meds
@hsletter Helen – there was a recent discussion about replacing albuterol with levalbuterol to address the rapid heart rate, tremors,etc. If your doctor thinks you would benefit from a nebuliser, you should address this issue. Levalbuterol is the generic form, much less costly than the original name brand Xopenex.
Liked by Terri Martin, Volunteer Mentor
@jkiemen, Hi Jo Ann, I just wanted to add that most people over the age of 50 have nodules in their lungs. Most of the time it isn't anything to worry about. Most mac patients have them, or have had them, or will get them. Mine come and go over time. My dr is not concerned with them. He is only concerned with keeping the mac and pseudo away. Please keep us posted.
@jkiemen I thought I replied to you, but I’m not seeing it. I see Dr Randy Lipchik at Froedert. I would like to get an ID doc on board to make sure we get rid of this. I was first diagnosed 10 years ago at 37 y/o. I am doing really well after the right middle lobectomy. I’m 11 days out and walked .8 miles today! I still have mild pain that Tylenol and muscle relaxer has helped with.
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@angiejohnson My Pulmonologist and myID doctors are suggesting lobectomy also. This is my second MAC infection and bronchiectasis is getting worse. How long did you stay in the hospital? Did they place a chest tube after surgery? I am scared to have the surgery, but I think It makes sense to get it done. If brochiectasis is getting worse, it might affect my entire right lung if I keep getting infections. Don’t know what to do. I always pray that God will lead me to the right decision.
@jasmine321 I don’t know if this is my second, or if the first never really went away. I was diagnosed, treated for 2.5 years, then “clear” for 6 yrs. My right middle lobe was filled with infection and bronchiectasis. I was scared also. They usually have the chest tube in for a day after surgery. It’s uncomfortable- probably worse than the incisions, but tolerable with pain meds and muscle relaxers. I should have gone home after 2 nights. Unfortunately when the PA pulled my chest tube, air leaked under my skin and I got subcutaneous emphasema, or crepitus. They had to put a chest tube back in to suction out the air. That caused me to be hospitalized 3 extra nights. I just had to stay positive and keep telling myself this will be over soon. You can do this!
Liked by Terri Martin, Volunteer Mentor
@mariierod123
Yes i dont want to do the biopsy im scared