Another update on my journey

I have an appointment with an infectious disease doctor on Jan. 15th. I have also taken steps toward getting a real specialist.

My secondary infection seems to have cleared, but my chest tightness has not improved. My pulmonologist wants me off prednisone entirely and depends on the Breztri inhaled steroid. I can't handle it mentally right now, though.

When I can't talk without being out of breath, I can't do anything to take my mind off of the tightness. All my fears of a lifetime as an asthmatic come back. I begin thinking about my will and accepting that I will be dying soon.

It is the holidays, and my doctors will want me to go to the ER again. They are already doing everything they can with what they know, which will not change if I go to the ER again. So, I have taken a few more steps.

First, I am taking 5 to 7 mg of prednisone daily. I also contacted the premiere lung medical center in at least California, if not a larger area of the USA. UCSD, the University of California, San Diego, is considering my case. They specialize in lung transplants and are the only place with a Bronchiectasis specialist. He also comes up as a MAC specialist, but it is not listed as a specialty in their shortlist.

They could see my records from Loma Linda Community Hospital, where all the diagnostics are from. They send the records to their board, which decides which doctors are the best to treat me. I will be contacted within 3 to 6 days. I called them on Thursday and hope to hear from them soon.

If you haven't lived with asthma, you might not realize that it can be psychologically affected. If I know I don't have my inhaler, I can feel the need to use it coming on. So, when I can't breathe clearly, it is not good. I go to bad places. One way to keep this from happening is taking control. I know what I need in the short term until someone can figure out what needs to be done. I hope my MAC, having spread from the lower to the upper lobes since Oct., might get me into UCSD quickly.

For those who have gone to specialists, what was the process of starting with them? Would they want me to stay a few days for tests? The office is over 70 miles from my home. It is drivable but can be considered too far of a distance in some situations. (My husband was evaluated for a lung transplant, and we would have to be closer to the hospital if he were to need one.)

Thank you for all of your support. I wish you all a happy new year, and for the first time in decades, I am hoping for a significant change for the better.