(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!

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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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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@windwalker

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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@windwalker I know how you feel, avoiding bugs is our biggy but others do not seem to get how important it is for us. I would definitely send him to their place next time and he should understand why. Good luck over the next few days, hope you stay well. Take care.

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@windwalker

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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I would be ticked off if my husband had volunteered my services to anyone. You don't give up your individuality when you become a couple. Larger problem is the very common lack of understanding of the difficulties of this lousy disease. You're up your down. No predicting how you will feel throughout a day. And the necessity of avoiding any thing that might infect your lungs. Getting a cold can be very serious. I know, I landed in the hospital with what started out as a cold. Maybe send you husband over with a note saying you have a chronic illness and must avoid colds of any kind. I dislike having to educate the people around me about my illness...I mean who wants to talk or hear about it. But it's necessary; it's part of taking care of oneself. So hit you husband over the head with a frying pan, forgive him and carry on and stay away from those kids for now.

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@windwalker

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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@windwalker Terri....feel pissed at the situation with the imported cooties.......BUT know hubby was acting out of being helpful.....and assuming he is relatively heathy has no frame of reference. I honestly sometimes wonder if males reasoning and brains are designed differently than females.
Meanwhile, how to stimulate your immune system....play favorite...music.....read or watch items that release endorphins.....call a chum that you love to yak with. Etc
Meanwhile I will send the “white light “ that those cooties will pass thru your system and do no damage. Tdrell terri

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@windwalker

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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@windwalker I don't blame you for being pissed at all. What is he thinking? You are finally getting to a place where you feel healthy and are able to do things you enjoy. We, as women, are born care takers. So we are always think of others when we do things. But men can sometimes be pretty inconsiderate. We just have to keep reminding them and put our foot down for not doing things that may adversely affect our health.

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@windwalker

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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@windwalker888 Gee whiz Terri I am so sorry! Suffice it to say he just wasn’t thinking. After almost fifty years with the same man I have learned they just don’t think. Remember the book “Men are from Mars, Womrn are from Venus?” I am guessing he already feels badly about it. Going over to their home next time is the way to go except he still could bring bugs back to you, so I guess an “I’m sorry we can’t babysit sick kids” is the only answer. God willing you will feel better ASAP!

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@windwalker

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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Hi Terri! I am so sorry you’re sick. I’m sending hugs from Mayo Clinic!! I hope you’re going to be well soon. I got sick last week and ended up in the emergency room twice. Feel better!! Rita.

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@windwalker

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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@windwalker sounds like you need to sit down with him and talk...once you feel calmer...he doesn't seem to understand how fragile your health can be...easy to do if you generally look and act healthy. I'd say particularly for a man, but both men and women tend to be unable to fully grasp the seriousness of an illness/condition that's not always visible - we're not in a wheelchair or on oxygen, we do our best to live a life a normally as possible; folks forget or just don't get how susceptible we are. If helpful, bring him to a doc appt so the doc can verify your limitations and explain the reason for them in a way your husband will get...

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@boomerexpert Your suggestion of having @windwalker Terri take her husband to some of her doctor's appointment is a good idea. My husband used to complain about me not taking his advice of asking my doctor to prescribe cough suppressant because he was bothered by my noise of trying to cough up phlegm all the time. After I coughed up blood, he was concerned enough to go to a couple of doctor's appointments with me and heard my pulmonologist educate him about the possible cause of MAC. At that point he realized how critical it was for me to cough up as much the phlegm as I could rather than using medication to suppress it. No more complaints and no more bugging me to get cough suppressant. I'm otherwise very healthy and I'm very active. If it wasn't for the explanation from the pulmanologist, there would be no way for him to believe that I had problems with my lungs.

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@windwalker

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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@windwalker ..Terri...So sorry to hear you have caught a bug. I so hope that you can battle it out and not wind up in the hospital.I'm saying a little prayer for your good health...stay strong Kate

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