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
Sue, Volunteer Mentor | @sueinmn | Dec 17, 2019
In reply to @heathert "@anniepie yes I purchased from USA Pari. Here is the link about it, such a great..." + (show)
@heathert

@anniepie yes I purchased from USA Pari. Here is the link about it, such a great machine.
https://www.pari.com/int/products/inhalation-devices-for-the-lungs/eflowrrapid-nebuliser-system/
Yes I am off the meds and doing well . Take care Heather

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Thanks, Heather - that's exactly the info needed. Now to find out if my insurance will pay for (any) of it - always an issue, especially with Medicare. My daughter has tried the smaller hand-held "impeller" type units and reports that they don't last because the screens in them become inefficient over time. Managing this condition is a trial sometimes.
Sue

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heathert | @heathert | Dec 17, 2019

@@sueinmn I hope this lasts longer for us all, Its a really great machine so far. Good luck Heather

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heathert | @heathert | Dec 17, 2019
In reply to @judyhodgern "That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not..." + (show)
@judyhodgern

That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not coughing or SOB?? You probably aren’t but I was just wanting to see someone that is so fortunate of not having the organisms that you are able to be symptom-free. I would presume that is just wonderful!!. Thank you so much.
I just had surgery about four days ago and my right upper lobe Of my lung was removed so I’m hoping that it will help my symptoms and I will be a stopping coughing in the future and puttinga Me in remission for a couple of years🙏🏻🙏🏻🙏🏻🙏🏻 I am still in hospital at the Univ of Colorado. Laparoscopy but still major surgery.

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@judyhodgern Hi I do not have shortness of breath, fantastic, and I do cough occasionally, maby from the Bronch or my allergies but not like when I had MAI raging through my lungs. I had a few cavities and they have now closed but left scaring unfortunatly. So yes pretty much symptom free, phew. I hope you will be soon too. Are you also on the big 3 antibiotics.Take care and look after yourself after the surgery. Heather

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vetnyregr | @vetnyregr | Dec 19, 2019
In reply to @judyhodgern "That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not..." + (show)
@judyhodgern

That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not coughing or SOB?? You probably aren’t but I was just wanting to see someone that is so fortunate of not having the organisms that you are able to be symptom-free. I would presume that is just wonderful!!. Thank you so much.
I just had surgery about four days ago and my right upper lobe Of my lung was removed so I’m hoping that it will help my symptoms and I will be a stopping coughing in the future and puttinga Me in remission for a couple of years🙏🏻🙏🏻🙏🏻🙏🏻 I am still in hospital at the Univ of Colorado. Laparoscopy but still major surgery.

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Do you have Dr. Mitchell for your surgeon? I will have my right lobe removed by him in April. Pray you are doing fine. Is it a long and painful recuperation? Please add any guidance you have for me. Best wishes for speedy health!!!!!!!

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heathert | @heathert | Dec 20, 2019
In reply to @ginak "Thankfully, I don’t have very bad coughing unless it’s allergy season, (May and September for me),..." + (show)
@ginak

Thankfully, I don’t have very bad coughing unless it’s allergy season, (May and September for me), with awful post nasal drip. Then, infrequently, I cough so bad it makes me gag! I started wearing bladder leakage pads also 2 years ago for a couple of months. But, then found out it wasn’t my bladder after all. At my yearly GYN appointment when I told my Dr about it, he didn’t think it was urine so he did a biopsy and surprise, I had endometrial cancer. Thank God it was very early stage! I had surgery and radiation and am now 2 years cancer free. AND I no longer wear a bladder pad. So I guess my cough and throat clearing isn’t that bad after all, but, it’s still annoying sometimes. I’m happy, and sad, there are others that understand this crazy journey. 🙏🏻 for all.

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@ginak Oh my goodness how awful, so glad you are now cancer free!

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anniepie | @anniepie | Dec 21, 2019
In reply to @anniepie "Thanks very much Heather @heathert -- you take care too" + (show)
@anniepie

Thanks very much Heather @heathert -- you take care too

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Have a good and safe Christmas and New Year everyone, and wishing you all of the healing you need
Annie

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1 reply
chinasmom | @chinasmom | Dec 21, 2019
In reply to @anniepie "Have a good and safe Christmas and New Year everyone, and wishing you all of the..." + (show)
@anniepie

Have a good and safe Christmas and New Year everyone, and wishing you all of the healing you need
Annie

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@anniepie, thank you so much. I am hoping there is healing for all too!
You are loved for all you do.
Becky

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alleycatkate | @alleycatkate | Dec 21, 2019

@anniepie Best wishes to you also!! Hope everyone has a happy holiday and good health in the new year!! Kate

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heathert | @heathert | Dec 21, 2019

Merry Xmas and a Happy New Year to all, and heres to better cures in the very near future! Take Care Heather

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1 reply
america | @america | Dec 21, 2019
In reply to @heathert "Merry Xmas and a Happy New Year to all, and heres to better cures in the..." + (show)
@heathert

Merry Xmas and a Happy New Year to all, and heres to better cures in the very near future! Take Care Heather

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Merry Christmas to all! Health and healing! Hope and joy!!

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