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 27, 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, Is Jess still coughing up- blood at this point?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 27, 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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@joan, Do you live in Ca.? I know Kaiser covers folks there. UCSF has an excellent healthcare dept for lungs. Also, has your husband applied for disability? With low breathing scores it is easy to qualify. That way, he can get on Medicare and seek help wherever he wants.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 27, 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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@suzie2017 Gosh, Alheimer's on top of everything else? That is a rough road I am sure. I hope that many blessings come your way for being such a good caregiver to him. Sending you hugs, -Terri

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Flib | @flib | May 27, 2018
In reply to @flib "Thank you so much. It takes a while to master the vocabulary." + (show)
@flib

Thank you so much. It takes a while to master the vocabulary.

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I'm not on antibiotics so not the source of the weakness. I'm very thin;make that skinny and can't gain the weight back. Lactose bothers me so ice cream etc are not helpful. I go to a gym twice a week "Overload" and work out with a trainer. I was very regular for a while but have missed sessions, feeling to weak to leave the house. The ginseng/royal honey and pollen are working so far. Nice to have them as a back up. Thank you for your help. I'm learning a lot.

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Suzie2017 | @suzie2017 | May 27, 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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Alzheimers is the least of my worries. It is a very slow progressing disease. It is the nasty COPD that I worry about.

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Suzie2017 | @suzie2017 | May 27, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial..." + (show)
@suzie2017

I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial scope prior to putting him on any treatment for Pulmonary MAC infection. The bronchial scope will be Tues. He said he wants to rule out cancer before proceeding. He has a shadow on his lung and the Pulmonologist said today that it is too risky to do a biopsy during the procedure due to his blood thinners, but he will “brush” the shadow to try to get something to look at. The substance that will be pulled out of his bronchial tubes will be sent to a Jewish Colorado Hospital for processing which will take about 4 - 5 weeks. I started to wonder that if the treatment plan of 3 antibiotics is used, what will the cost be. My husband has Medicare and a good supplemental.

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Yes, he had a sleep apnea test about 2 years ago and everything was fine. In the past 6 months he took another test to see if he needs oxygen at night and the results indicated he did not need night time oxygen. I often wake up and watch him breathing at night, thinking that he might quit breathing, but he never does. He breaths very easily at night.

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Suzie2017 | @suzie2017 | May 27, 2018
In reply to @flib "Thank you so much. It takes a while to master the vocabulary." + (show)
@flib

Thank you so much. It takes a while to master the vocabulary.

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Cipro can cause many side effects, probably like most antibiotics. My husband is on Cipro every time he gets pseudomonous. Yoga is excellent and so are walking classes. My walking class is a mixture of walking, dance, Pilates and yoga. It has really helped my lower back. Be careful with weights.

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Suzie2017 | @suzie2017 | May 27, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease Doctor yesterday. He said there is no way..." + (show)
@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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Here is a snack that I found on Pinterest for individuals trying to gain weight. On a toasted English Muffin, spread a thick mixture of smashed avocado, spread some ranch dressing, and layer turkey lunch meat, sliced tomatoes and nice slice of cheese for the topping. Put in microwave for 10 - 15 minutes. I actually put the cheese on during the final few minutes. Yum!

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Suzie2017 | @suzie2017 | May 27, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease Doctor yesterday. He said there is no way..." + (show)
@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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Yes, he has been on a nebulizer for 3 - 5 years. He is very loyal and uses it two times per day. He is suppose to use his Aerobecca following the nebulizer treatments but he seldom does. The Aerobecca requires the user to exhale to help loosen secretions so that they can be extracted easier. It is an effort for him to use the Aerobecca. He also uses Musinex to loosen the secretions and it works very well. Have you ever tried a shaker jacket? We are considering getting one. Often children with cystic fibrosis use them to help loosen their mucus.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 28, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease Doctor yesterday. He said there is no way..." + (show)
@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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@suzie2017 I am glad that Jess stays regular with nebulizing. I have not tried the vibrating vest. I did see a demo booth at the conference in D.C. Let us know if Jess gets one and if he likes it. Is your son still there?

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