I 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.