Difficulty breathing on airplanes

Hello @maryd, while we wait for other members jump in, it may be helpful to share a bit more about your experience. If you are comfortable, would you mind sharing what respiratory infection you had in 2006?

@maryd @JustinMcClanahan Here is an article about what happens to your body when you fly. There happens to be lower levels of oxygen in a pressurized aircraft. Which could be the cause of the problem? You can request oxygen when you fly. It needs to be arranged in advance.
http://www.foxnews.com/travel/2015/03/16/what-happens-to-on-plane-scary-health-effects-flying.html

Hello Justin,
I wish I knew what kind of upper respiratory infection I had. I only remember it was similar to the flu. Fever, sore throat, body aches, and cough. It occurred during a period of time when doctors were trying to cut back on the use of antibiotics. I was sick for a couple of weeks and then had one week of wellness followed by a constant cough. I requested an antibiotic but the doctor refused because my temperature was normal. After a couple of weeks of coughing I developed chest pains and ended up in the emergency room. I was told that my EKG was abnormal but they did not think it was a heart attack. They sent me home. I was weak and short of breath for months. I had a cardiac work-up shortly after because the symptoms never went away. I have had numerous tests both pulmonary and cardiac over the years, but no answers yet. The things that worsen the symptoms are exercise, any amount of alcohol, flying in a plane, and dental procedures. I know that may sound odd, but I'm really hoping that someone out there has had even a remotely similar experience. I feel there was a cardiac event from the untreated respiratory infection because my EKG has never been the same. Doctors always say the EKG has non-specific changes. My O2 sats have never been the same either. I have not flown in a plane or been able to resume an exercise program since this happened.

@maryd Wow, your story sounds very similar to mine. I am reading over your posts so that I know more about you. I will reply to your last post that you directed to me when I am through.

@maryd I too have issues when I fly. I have always brought an oxygen concentrator with me. I know that I have trouble with altitude period, even in the mountains. I was recently tested for flying and cleared to go without oxygen. I am getting ready to fly in two weeks. I am a little apprehensive about flying without my oxygen.

@windwalker I think I would take an antianxiety med for one thing If they cleared you to fly but th know your own body just saying Good luck

Hello windwalker. Great that you have been cleared to fly without O2. Can you comment on the the following 2 questions? 1.)Can you tell me what test you had in order to determine the need for O2 on flights? I had a H.A.S.T. (high altitude simulation test) which showed that I do not need O2 on flights but yet I feel like someone is sitting on my chest when I fly and very short of breath. After the flight I am short of breath and weak for several days with chills. #2) I can not find the post I sent you regarding "Tobramycin changing your world". I am anxious to hear more about the history of your illness, symptoms, and the treatment with Tobramycin. I'm thinking this may finally be a case similar to mine. Thank you!

Hello windwalker. How are you doing? Did you feel ok on your flight without O2? I hope you are doing well. I'm sending my last post to you again. You may have replied on a different discussion page but I can not find it. Would you mind reading this post again and replying? I apologize if you have already done so. Here goes: Hello windwalker. Great that you have been cleared to fly without O2. Can you comment on the the following 2 questions? 1.)Can you tell me what test you had in order to determine the need for O2 on flights? I had a H.A.S.T. (high altitude simulation test) which showed that I do not need O2 on flights but yet I feel like someone is sitting on my chest when I fly and very short of breath. After the flight I am short of breath and weak for several days with chills. #2) I can not find the post I sent you regarding "Tobramycin changing your world". I am anxious to hear more about the history of your illness, symptoms, and the treatment with Tobramycin. I'm thinking this may finally be a case similar to mine. Thank you!

@maryd Hi Mary! I have been tested twice over the years with the H.A.S.T. test. The one back in 2006 indicated that I needed oxygen. So I took my POC onboard with me. In 2013; I began antibiotic treatment at the Mayo Clinic (not the Big 3) Over the years I got more of the infection gone and was tested again in 2016 and cleared for flying without oxygen, but still need it at night. I flew to Arizona that year starting out in Savannah, Ga. to Houston. That leg of the trip produced a little bit of oxygen drop, then flew out of Houston to Tucson, Az. During that leg of the trip, I am guessing at it's highest altitude; my oxygen plummeted and I was well on my way to a panic attack. I felt like I was not getting air. My husband held my hand and coached me on breathing to calm down. I did breathing exercises to get me through it. I hadn't flown again since that trip until recently (6/10/18) to go to Minnesota to attend a function at the Mayo there. My doctor said I could fly without it, and get away with going without it for several nights. I was nervous about going without oxygen and I really didn't want to lug my POC onboard because it is not the tiny ones they have out now. It is the size of a carry-on suitcase. I did fine flying there, but had a little bit of issue coming home. At peak altitude, my oxygen dropped to 84 and I started to feel anxious, but I kept calm and did breathing exercises to get my 02 up to 91. I had my pulse ox with me and I kept doing the exercises until I was able to maintain the 91 reading. I think I had trouble on the way home because I was exhausted. I did not sleep much while in Rochester. I have noticed that when I am physically tired, my lungs are tired also. They tend to have weaker muscle around them to move the lungs. BTW, I have a totally flat and stiff diaphragm, so my muscles do most of the work. I was in bed or on the couch for three days after I got home from that trip. Sound familiar? I will write on a separate post about the tobramycin, as this post is getting long.

@maryd, Mary, about the tobramycin. I consider that to be my miracle drug. I have choked, hacked, coughed almost non-stop for many years prior to 2016. It was so annoying. I couldn't go to restaurants, movies, or theatre because of the constant coughing. I had pulled muscles and strained my bladder from violent coughing. I began treatment at the Mayo in 2013, the cough lessened over the next several years and was minimal by 2016. Then, the spring of that same year, The bad coughing was coming back along with greenish sputem. I tested positive for pseudomonas infection. Now, I was currently on Cipro and doxycycline on alternating months when I caught the pseudo. I was then put on a 30 day run of nebulized tobramycin. It made me very hoarse the first few weeks and it made my lungs feel a little wetter. By the end of the 30 days. My cough vanished completely. I was then put on alternating months of Cipro for ten days, and then back on the toby for 30 days. I am on the regimen to this day and have not coughed since 2016 except to intentionally cough after nebulized saline treatment to clean out the lungs. Tobramycin was my turning point where I finally felt like a normal human being after a ten year period of coughing and being so short of breath I could do very little. I am still short of breath, but not as severely as I was. My diagnosis is bronchiectasis, COPD w/severe blockage, mild pulmonary hypertention, Alpha-1 carrier (A-1 carriers tend to get serious lung diseases) history of mac & pseudomonas infection. Mary, please keep in mind that everyone different, what works for one, doesn't necessarily work for others. Does my case seem like yours?