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!

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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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@joan912 I am so sorry that it played out that way. Something doesn't sound right.

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Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @1478 "wow, This is good to know! My mother want into the hospital at 7000 ft because..." + (show)
@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@1478 Hi. I was just reading over older posts. I am glad your mother refused the lonbectomy. Did this happen in Denver by any chance?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @gaelawree "Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I..." + (show)
@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@jspremich Hi. Like @boomexpert said, there are other ways to treat mac. I was on alternating monthly antibiotics for 10 days each month, and no side effects. I was on them 3 yrs. It was a less toxic route for me. Just in the last year; newer drugs have been released. There are some that are now nebulized (inhaled). That puts the antibiotic directly into the lung and bypassing the rest of the body and organs. You will need to talk to your doctor about it.

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Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @cowgirlmt "Has anyone been to National Jewish Health in Denver Colorado?? I did a phone consult with..." + (show)
@cowgirlmt

Has anyone been to National Jewish Health in Denver Colorado?? I did a phone consult with them this morning; pending an appointment. I am just trying to figure out if I will need to take a week off of work to fly up there or if it will just be an appointment 1 day.

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@cila So, do I understand you correctly? You are no longer on any antibiotics? I am glad to know that you are at least doing the saline, that is very good for keeping the lungs clean.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @suzie2017 "My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with...." + (show)
@suzie2017

My husband had his bronchoscope yesterday. The report shows terms that I am not familiar with. The doctor came out to talk to me but rattled on so fast and I was unable to compare what he said to the report. Here are some of the phrases in the report. Left lower lobe collapsed lung and pushing against the heart, abnormal left main stem bronchus (report goes on to say the same thing about right, left upper, left lower, right upper right middle and right lower lobes) including the subsequent. Washings were obtained in the entire tracheobronchial tree and return was cloudy. Doctor used the words “milky” and said it could represent a new infection. Area of chronically inflamed mucosa was found throughout the tracheobronchial tree. Mucous was copious, green, mucopurulent and thick, underlying mucosa is friable, extrinsic compression was found in the left lower lobe segment. No attempt to do TBBrushing of LLL segment due to friable bronchial mucosa (must mean blood). Does all of this point to end of stage COPD?

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@suzie2017 I am glad to hear that Jess' fever came down. That could mean that the anti-biotics are kicking in. Just keep an eye on the blood amount, especially since it is close to the limit for going to the E.R. I know that the weight loss is scary. I went from 142 lbs to 116. If your husband's lung infection can get under control, his weight should come back. (I am now at 132 lbs) Do you also have a pulse oxometer to monitor his oxygen level and heart rate? If not, they can be purcjasrd at a drug store or ordered online. They are a lot cheaper online. A decent one online will run $21 00. They are good to have on hand so that you can have a real handle on his condition. I mention this because you questioned if he could be in end stage COPD. It sounds like you are doing your best to take care of him. I bet he really appreciates it. Sending you hugs -Terri

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joan912 | @joan912 | May 20, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

No, neither of us is eligible for Medicare. Kaiser wouldn't approve the referral. We took all the records and CT Scans. The physician we saw did do an initial consultation and evaluation. She wasn't sure that the MAC was still active but wanted to do another CT Scan, which made sense. She thought some of my husband's symptoms might be caused by something unrelated to MAC, therefore the extensive tests, which would have cost a lot more than our initial payment.

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1478 | @1478 | May 20, 2018
In reply to @1478 "wow, This is good to know! My mother want into the hospital at 7000 ft because..." + (show)
@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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Hi again. It has been a long year!! My mother lives in Vegas and was visiting Flaggstaff, AZ when she started coughing up a cup of blood at a time. The hospital had her scheduled 3 times to get a lobectomy, "on her lower left lobe" and she refused because she could tell the bleeding had slowed way down and stopped. After 4 days in the hospital they sent her down to Mayo-AZ in Pheonix area. When the doctor at Mayo did a scope told her "Good thing you refused the lobectomy, you bleed was from your right middle lobe". This is how my Mother's MAC started showing symptoms for the 1st time. Please understand I have been a Paramedic in Emergency Medicine for the last 10 years and this one even boggles my mind.

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Suzie2017 | @suzie2017 | May 20, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

Jump to this post

Thank you Terri. My husband does seem to be getting better as far as the amount of blood he is spitting up in his phlem. Last evening there wasn’t any blood showing. I am amazed that he feels as good as he does. Yes, we have an oximeter to keep tabs on his oxygen level. He is normally around 93 when he is on oxygen and then he goes in to the mid 80’s when he is off. I take his temp AM and PM for the ID Doctor and it has really been running low. Off and on around 95.8 - 97.8. He continues to eat well. I am glad to hear that you have gained some of your weight back. Do you also feel better? Are you continuing on antibiotics or do you have your Mac under control. You are great to respond to everyone.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @1478 "wow, This is good to know! My mother want into the hospital at 7000 ft because..." + (show)
@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

Jump to this post

@1478 LOL, Mac boggles everybody's minds. Doctors and scientists too. Mac tends to morph so it is difficult to stay ahead of it. It is an evil bacteria, but it intriques me.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 20, 2018
In reply to @1478 "wow, This is good to know! My mother want into the hospital at 7000 ft because..." + (show)
@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

Jump to this post

@1478 As I had said before, I am glad that your mother refused the lobectomy. There is another treatment for badly bleeding lungs that we discussed before on here. It had the word xray in it. Lets ask the others if they recall that info. In the meantime, I will try to find it. I believe it may be some type of cauterizing. So, how did they stop the bleeding, or did it just stop on it's own?

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