(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

Moving to North Tampa. Does anyone know of a good MAC doctor?

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@joan912

General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6 months, once a year, or ?

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@joan912 , Hello Joan. My doctor at the Mayo Clinic said he doesn’t like a patient to have a CT Scan more than once a year, unless neccessary. CT scans are very powerful and can cause changes to your cells and DNA, so it is wise to only do get one infrequently. There is info on the precautions of scans on Google. Just be sure to go to ligit sites like Mayo, Johns Hopkins, etc. so that you get the real scoop.

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@joan912

General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6 months, once a year, or ?

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Thank you, Terri. I think that’s prudent. I believe certainly no more than once every 6 months, and preferably once/year.

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@joan912

General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6 months, once a year, or ?

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@joan912 My pulmonary doctor does not like to order CT scan frequently either. I had one done when I first diagnosed. The second one was ordered last week after 3 years of the initial diagnosis. He does, however, order a chest X-Ray to be done every time before I go to see him (which is every 6-12 months) so he can make the comparison.

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@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

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@suenfl

Moving to North Tampa. Does anyone know of a good MAC doctor?

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@suenfl although Terri is correct re: Gainesville & Jacksonville, I’m aware of the hours-long drive they entail. That said, there’s a dearth of good doctors of any sort in the Tampa Bay area…this is where the mediocre ones go to pretend to work…try docs associated with Tampa General/USF Med school…

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@suenfl

Moving to North Tampa. Does anyone know of a good MAC doctor?

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@boomerexpert , Thank you for contributing that, as I know little of the Tampa area. I have added it to my list of recommendations for medical help across the country.

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To those with (or who have had) MAC/NTM, bronchiectasis, pseudomonas, or limited lung capacity the following is information on:
• Flying with a portable oxygen concentrator (POC)
• Flying with a PAP device (for those who have sleep apnea)
• Using oxygen WITH the PAP machine
• Renting or purchasing a POC
• Different types of portable oxygen concentrators
• Medicare and coverage for renting or purchasing POC
• Difficulty breathing while on long ( 3 hours or more) airplane flights
• Getting a POC through airline security prior to flight
• Taking the high altitude test at the hospital, prescribed by your pulmonologist
• Effects on breathing when travelling to areas of high altitude

As someone who has had to suddenly deal recently with all of the above issues, I wanted to share with you the information I have learned over the last year. I am 68 years old and was diagnosed with MAC almost 2 years ago. I completed the 18 month regimen of the Big 3 meds in May 2017. I was diagnosed with pseudomonas during this time but this was cleared up by taking Levaquin. My coughing has almost vanished, but I have had numerous cases of pneumonia over the last 2 years and each time my lung capacity has deteriorated. To add insult to injury, I was diagnosed with sleep apnea in July 2017. I began using the PAP device in August and use it every night. I live at sea level (Boston) and when home my oxygen levels are around 93 or 94, even with brisk walking. I do get breathless when working in the garden or walking fast, but I do not have to use my rescue inhaler in most instances.
I have been travelling to Idaho for many years where the elevation is almost 6000 feet. For many years I have also been travelling back and forth from Boston to California (6 hour flight) with no issues. In the last two flights I took, using my oximeter, I could see that after one hour in flight when the plane hit 30,000 feet, my oxygen fell into the 70s and low 80s – not good! My pulmonologist then advised me to use a portable oxygen concentrator when I take long flights, so I now take that whenever I fly.

PLEASE NOTE: I took the high altitude test at the hospital and passed it with flying colors. Clearly, if one passes the test, it is not necessarily an indicator that one will NOT have problems flying, or being in high altitudes. When I took a short 45 minute flight of 28,000 feet, my oxygen levels were fine. This for me indicates that the length of time one is in a plane can make a big difference.

I had never had any problems with being at high elevations until the last year. Once I arrive now, my oxygen levels fall into the 80s and the first few days I get breathless with little exertion. I can breathe, but whenever I can, I use my POC with a setting of 2. The longer I am there, the less I have to use the POC during the day, but I now know I can no longer exert myself much at all at this high altitude.
My sleep doctor also did an overnight test for me in Idaho, while using my PAP machine. This is a simple test where he sends you a small device that you put on your finger ( like an oximeter), but it is computerized and measures your oxygen levels all through the night while you have the PAP on. Then you mail it back to him, and he downloads the information. He could see that even on the PAP, my oxygen levels were still too low. So now he has prescribed that I use constant flow oxygen WITH the PAP when I travel to Idaho. I rent that device ( large like a suitcase but on wheels) when I get to Idaho.

There are two kinds of portable oxygen concentrators. One is called a “pulse” POC and sends oxygen to you in pulses, with each breath you take. The other is called a “constant flow” POC, and sends a constant flow of oxygen to you whether you breathe or not. The lightest in weight and smallest to carry around is a pulse POC ( from what I was told, they have not yet come up with the technology for a light weight easy to carry constant flow POC).

Airline rules for flying with a POC:
When flying, one can only take the small pulse POC on the plane, as the constant flow one is too big to put under or by the seat with you. The one I now rent is an Inogen One G2. I put it by my feet so I could turn it on and off when I needed to, and no one told me to put it under the seat, so I didn’t. If you have to take one on the plane with you, check the rules with the airline; each airline has a different set of rules. I have now flown United and Delta, and though one does have to call ahead (48 hours) to get permission, both airlines made it relatively simple to get an ok. The airlines only permit certain brands for flying so be sure you rent or buy one that is listed for flying; there are a lot of options. Some airlines make you fill out a form, email or fax it in, and then once they approve it, will send an email back with permission. This must be printed out and taken with you for security to see. Do all of this at least 48 hours in advance of your flight.

HOW TO TRAVEL by plane with a POC device: It was strongly advised by one of our forum members that I order a wheelchair when first flying with my POC. This was invaluable information. If you try to go through security in the usual fashion, you risk being delayed for very long times; many of the TSA people are not familiar with these devices and you will get pulled out of line while they check it. If you order a wheelchair ahead of time, you sail through security with the device. I was not happy to order a wheelchair as I pride myself on being very self sufficient and I am able to walk. But this advice did serve me well, especially when I arrived in Salt Lake and would have had to walk a very long distance to another terminal to get my next connection to Idaho. Best advice I got: ORDER THE WHEELCHAIR ahead of time!

HOW TO TRAVEL by plane with a PAP (sleep apnea) device: this is very easy. One can either pack it in a suitcase, or take it as carry on. Because it is a medical device, airlines do not count it as carry on and allow you to take it on the plane along with a handbag and carry on suitcase. I have taken mine both as carry on, and in a suitcase.

MEDICARE and coverage of Oxygen concentrators:
Getting Medicare to cover the costs of renting or buying POCs seems to be problematical. I have been told that to buy one, it can take up to a year to get approval. When I called Medicare, they told me that they do cover rentals, but I have not yet turned in all the needed paperwork. Many of the companies that rent these devices will not deal with Medicare at all, leaving it in our hands to do the paperwork. Renting costs vary by states. I am renting a POC (the Inogen One G2) that is 500. for 4 weeks of rental. To buy this particular POC I have seen it cost anywhere from 2900. to 3200.
I hope this long email can be useful to some of you. If I have made any errors, please make corrections! Pamela in Boston

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@heathert

Hi all good news re : Nitric Oxide Treatment, I got a reply from my email to them, here it is:

Thanks for your email. AIT is moving as quickly as possible to provide our nitric oxide treatment for NTM patients. At this time we are conducting a phase 2 trial in Israel. We hope to begin a phase 3 trial in the United States in 2018 that will lead to US FDA approval. We have a lot of work to do and all of the employees are dedicated to succeed. I will add you to our email list so that you will be up to date on our progress.

I will forward any updates I get onto this site. So amazing that they are able to work so fast with such a promising treatment.
Heather 🙂

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Hello Terr M, yes I’m dong the saline and the Aerobika. I do 2x a day salne and 3x a day Aerobika. Dr. Huitt took me off the 4 antibiotic second day I was there. My sputum culture will not be ready until 6 to 8 weeks she said. It seems I feel much better since I stop the big 4. I hope I don’t have to take them again. How many times you do the saline? Do you have Bronchectasis? About Aerobika do you use it? I also have bad acid reflux and she wants me to learned to control the aspiration into my lungs. Terri, don’t get tred of my many questons pls. Thank you so much! Cila

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Does anyone use a PIC line to get their meds???

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@heathert

Hi all good news re : Nitric Oxide Treatment, I got a reply from my email to them, here it is:

Thanks for your email. AIT is moving as quickly as possible to provide our nitric oxide treatment for NTM patients. At this time we are conducting a phase 2 trial in Israel. We hope to begin a phase 3 trial in the United States in 2018 that will lead to US FDA approval. We have a lot of work to do and all of the employees are dedicated to succeed. I will add you to our email list so that you will be up to date on our progress.

I will forward any updates I get onto this site. So amazing that they are able to work so fast with such a promising treatment.
Heather 🙂

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To all of you?

Video deglutition today reveals I am doing aspiration whwn I drink.  Does everyone do aspiration into your lungs????  Is this part of the bronchetasis ?

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@windwalker

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

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Thank you. I am moving to Tampa because I can’t live alone right now. Will be checking things out

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@windwalker

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

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Hey suenfl,

We spend 5 1/2 months in Largo. We have a home there.  That is close!

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@sophie1019

Does anyone use a PIC line to get their meds???

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Are you getting IV meds?  PICC Line would be for long term IV meds.  What Meds are they going to use? Were you already on the 3 antibiotic regimen?

Jo Ann K
 
 

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@sophie1019

Does anyone use a PIC line to get their meds???

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Hi Jo Ann

I don’t know if you are talking to me but I don’t  take any meds at all.

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