My doctors have decided not to treat my MAC or Broncheostatis

Due to a pre-existing heart condition I have called Long QT Prolongation Syndrome they cannot give me the “big 3” and the extra one they threw in there. QT is where your heart stops beating. Wearing a holter monitor they tracked the longest interval of my heart stopping at 18 seconds. Unfortunately, ALL of the big 3 drugs come with the side effect of causing QT. Which would make it very unlikely that my heart would start again since I am already at the danger level. So, after confirming that with the hospital clinical pharmacist, they told me there is nothing they can do for me.

I write this long saga to ask for advice on how I can help myself going forward since I am now flying in the wind so to speak. I have read comments about ACT and pulmonary rehab but know nothing about it or what else I should be doing as I move toward the inevitable. I asked for a prescription for a vest and they refused. I asked about learning ACT and the doctor said I already told you about it and what to do - which was a big lie. I asked about pulmonary rehab and got no reply. So, any recommendations on where to learn to do ACT, pulmonary rehab and anything else that will help me fight this beast on my own?

One of the things I never want to hear again is “well we all have to die.” Which two of them said to me. Changing doctors won’t help because they will all prescribe the big 3, which has been ruled lethal for me. I’m fighting this on my own now because of the QT.