Hello Katherine - thanks so much for getting back to me. Here is my question: have you or anyone out there had any experience with dealing with the affects of high altitude while dealing with MAC and bronchiestisis (I have both)? The reason I ask is that just in the last year, since I began treatment, on my trips to Sun Valley, Idaho ( which is at about 6,000 feet) I get what is called "nocturnal asthma". I have travelled there many times in my past but now it seems the high altitude is affecting my breathing. I wake up in the middle of the night and panic because I feel I am not getting enough air. Once I use my inhaler and sit up I can regain my ability to breathe, but for about 15 minutes it is very frightening. It only happens at night, after I have gone to sleep, though it also happens if I move too quickly... My daughter and son-in-law and my 3 grandchildren live there so I have good reason to want to be able to visit, but I am now reticent to travel there due to this problem. Clearly it is the altitude, as this has never happened to me anywhere else, and not where I live ( I live near Boston which is at sea level and I am fine at night. I just wonder if anyone in our group has had to deal with this, and if so, what they have done to counteract the symptoms. If anyone does have something to say about this, please do let me know! Many thanks, Pamela

@pamelasc1 Hello Pamela, I hope others will jump in because my ONLY experience is that when I asked Dr. Aksamit that with MY particular level of MAC and Bronchiectasis .. did he see any problem with me traveling to Machu Picchu because my son and family had just been there and were excited for me to go. They went up to close to 17,000 ft! Dr. Aksamit said for me NOT to go past 5,000. I asked him if it was health and/or age of 73. He said both but it would not be good for my lungs. That is my only experience. Hope others will share theirs!

This must have been so scary .. wonder if the 6,000 is similar to what I was told? Be sure to check with your doctor who knows your whole history. Hugs! Katherine

Hi, Pamela, I have bronchiectasis, MAC and atypical cystic fibrosis. My CF doc told me that if I went into a higher altitude, to be sure I could get back without any problem. I live in Phoenix, AZ (1,000 ft) and it's popular to head up to the mountains in the warmer weather. Since being diagnosed, I have been up to about 4500 ft elevation but was only there for a short period of time before coming back. I was just visiting a friend so hadn't planned on staying long. I doubt that I will attempt to go higher than that as I expect it would stress my already scarred and weary lungs. I do remember a few years back, before I was diagnosed with any of this, I was in New Mexico and got very short of breath just walking along flat ground. That was about 8,000 ft elevation. Now, if I'm planning on going anywhere, I always check to see what the elevation is. Linda

@lindam272, Linda, thanks a lot for jumping in .. good advice and help! Really ties in with what Dr. Aksamit told me. Might really help Pamela .. hope so. Hugs to all! Katherine

Dear Katherine, Linda, etc. - thanks so much for getting back to me about the affects and problems with altitude... I have also been checking out the videos on breathing techniques and just learning how to open the chest for better breathing practice.  Though it is very hard to accept that altitude does in fact have a strong impact on my breathing, I now have to get my mind around this reality.  Thanks so much again to all of you,  Pamela   

Last year, after being diagnosed with MAC, I was on oxygen for a while. I had a trip planned to Ireland. At the time of the trip I was off O2. My doctor was concerned about the flight but did not want me to cancel the trip. He recommended that I buy a pulse oxycimeter and carry a portable O2 machine with me. I did this and made the trip just fine. I only needed O2 when I got up and walked. Due to the altitude I did get short of breath on exertion. My doctor did not want me to let this disease control my life.

@laneyk, Elaine, this is GREAT advice!! I think it would be just wonderful if Pamela checked with her Pulmonologist .. found that with purchasing a pulse oximeter and carry a portable O2 machine .. would work! Problem solved! Thanks for jumping in! Hugs! Katherine

Thank you Linda...I have another question - for anyone who has been diagnosed with MAC and bronchiectasis, who has gone through the 18 months of treatment and has been found to be free of MAC after the treatment:   was your lung function test BETTER after the treatment?  Did you find that you had better lung capacity after the treatment?  Did you get less breathless?  I ask because I still have 4 more months to go before I come to the end of the 18 month treatment and my hope is that at some point maybe my lungs will not react so negatively in the high altitude.  Maybe this is wishful thinking.  I know that my bronchiectasis can not be reversed, but once the MAC is gone from my lungs, have people found they just breathe better and can move or do a fast walk without getting winded?    Pamela   

@pamelasc1 Pamela, one think to keep in mind is that we are not ' free of MAC after the treatment' .. we can become "stable" but the mycobacterium is still in our lungs .. just not multiplying/colonizing. For me .. my lung capacity was similar after treatment ended .. I am not a doctor but any damage to our lungs going INTO antibiotic treatment is NOT going to be magically healed by the antibiotic treatment. The only thing that will happen to our lungs with the treatment is the mycobacterium will be brought under control "stabilized". If our lungs were scarred/damaged PRIOR to treatment .. unfortunately .. the are STILL going to be scarred/damaged to the SAME degree AFTER treatment.

Unfortunately since May 2014 .. after I became "stable' after antibiotic treatment ended.. I have found my lung capacity slightly lowered .. who knows if it is the Bronchiectasis that we are left with .. or just merely the aging process. That is why it is so important to exercise so it can strengthen our lungs to the greatest capacity. I know this is not good news but I hope it is helpful.Katherine

Pamela, I just started my treatment last month so I'm a long way from being able to answer that question. Sorry I can't help on that one!