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When to seek specialized care? And procuring oxygen when traveling
Hello. Thank you for being such a compassionate and informed community. I read almost all the posts, as I try to figure out how best to support my mom, who has had MAC/Bronchiectasis for about 7 years now (she is 77). Your responses are informative and provide comfort to me, knowing she is not alone in dealing with this.
I have two questions. 1) When to seek better care/more opinions? Currently, she has: a great primary care physician who originally suspected MAC; she sees an infectious disease specialist (who specializes mainly in HIV & Hepatitis, not MAC) who has not proved very helpful thus far; she was seeing a specialist familiar with MAC at OHSU for two years (he helped us determine that she could not tolerate the Arikayce she was on), but he has since moved on; and she now also sees a new pulmonologist (and ended up in the hospital for multiple days last winter with a punctured lung during a bronchoscopy requested by that doctor). Her sputum samples have been clear of MAC recently, but her Bronchiectasis continues to worsen. Her quality of life and her energy have severely diminished in the last 8 months, and no one seems able to help her. She has been a very active person her whole life and still remains committed to doing her breathing exercises and trying to engage in daily life activities, but she is often super wiped out and out of breath. Lately she has been having more bad days. I have been encouraging her that we should go to Denver to the National Jewish Health for better quality care, and she was on board to go this fall, including doing all the legwork to figure out logistics/insurance/referrals. Unfortunately, last week her infectious disease specialist just told her she doesn’t think it would do any good, that they are doing all they can for her locally. This feels wrong to me. Wouldn’t having the care of a team of people who are highly trained and have lots of experience specifically with her two conditions be beneficial?? I’m curious to hear your opinions, as I try to figure out whether to press this with her or drop it.
2) If we do end up traveling to Denver, she has concerns about complications/barriers to traveling with oxygen. She does not currently use oxygen, but does have a prescription for it and has it on hand if needed. She is very concerned about supplemental oxygen needed, potentially during the flight and at high elevation. From her research, she learned that it is not simple to just get more oxygen if you run out when you are traveling out of state. Does anyone have experience with this?
Looking forward to any advice. I’m very worried about her, but trying to keep a good, proactive head on my shoulders. Thank you!
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Perhaps one of the other Bronchiectasis & NTM Care Centers would be more accessible to your Mom, and without the complications high altitude and air travel.
Here is the current list:
https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/2166/Thirty-three-centers-join-new-Bronchiectasis-and-NTM-Care-Center-Network.aspx
Thank you Sue.
I went to NJH in 2023. I am on O2 at night. My pulmonogist was glad I went. They do a lot more testing than any one has done. Recomend it highly. I was advised by my pulmonologist to use O2 during flight as altitude is about 8000ft but you may not need it. I took my portable and enough batteries for 1 & 1/2 x the length of flight. You need to contact airline for form to fill out. Medicare paid for my portable as well as my home O2 concentrator. My pulmonologist was unsure about prescribing Brensocatib and preferred NJH make that decision when it becomes available. Good luck.
Hello and welcome to you and your mom. I can't speak to the questions about supplemental oxygen on a flight. But I can strongly confirm what you already suspect, which is that it is very worthwhile to get your mom seen by a specialist who is familiar with bronchiectasis and up on the latest best practices.
I don't think you should have to get her current ID doc's permission for her to be seen at a specialist center.
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1 ReactionI am 76 l, live in Illinois, and recently decided to travel to NJH for a complete medical review of my case. I had NTM 2002 & treated successfully. My doctor in Washington DC at the time consulted with NJH on my case. I now have bronchiectasis & aspergillus colonization in my lungs. I had pneumonia eight times since December, 2023. I am now on supplemental oxygen. Traveling is of course no picnic. Since being prescribed oxygen several months ago, I have an oxygen concentrator by my bed, and a portable concentrator that I can carry with me with a shoulder strap. My doctor contacted a medical home supply company to deliver both to my home and educate me on the use. Medicare pays for both. I obtained a medical release to carry oxygen on the plane from my doctor, so that I can give it to airport security. There are certain oxygen concentrators approved by the FAA to use when flying. My portable concentrator lasts four hours between charges, which is enough to get me to Denver and to my hotel before needing to charge it.
I did not wait for my doctor to refer me to NJH. I called NJH and found out the procedure, and then instructed my doctor to send the referral, which she did. I personally never wait on my doctors to tell me what is the best course of action for my ongoing care – because I know nine times out of 10, they are not in the loop anyway about this disease. Mayo clinic connect has been the best source of information for me, even steering me in the direction of a new drug, bensocatrib - soon to be approved by FDA, and another research study for a bronchiectasis drug which I have signed up for. Good luck to you and your mother, and know that there are people who care and are ready to help on this information network.
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