(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.

OMG I was just diagnosed in July of this year. I was terrified. I have started my antibiotics 2 weeks ago. My question to you is...when you started your antibiotics did you have any chest discomfort in the first few weeks? I've been told I have a hole in my right lung and I find I'm having discomfort from time to time...regards
Jazzmin

I have not posted in a while. I have been off the MAC meds for a year. I am doing well. My meds were not stopped until I had negative sputum results, twice. I continue to see Pulmonologist every three months and have a chest x-ray every visit. There have been no changes suggestive of return of MAC. I have scarring that never changes. I feel well and have regain the weight I lost. I hope this is encouraging to other MAC patients.

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

OMG I was just diagnosed in July of this year. I was terrified. I have started my antibiotics 2 weeks ago. My question to you is...when you started your antibiotics did you have any chest discomfort in the first few weeks? I've been told I have a hole in my right lung and I find I'm having discomfort from time to time...regards
Jazzmin

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.

OMG I was just diagnosed in July of this year. I was terrified. I have started my antibiotics 2 weeks ago. My question to you is...when you started your antibiotics did you have any chest discomfort in the first few weeks? I've been told I have a hole in my right lung and I find I'm having discomfort from time to time...regards
Jazzmin

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.