Bon,
First off, I do hope the Denver visit has improved for you. I have just returned from my 4th trip to Denver in less than 2 yrs. The altitude always bothers me, since I live at sea level in CT. A week visit is not enough for me to get used to it. I feel they downplay this out there. Just being there causes me anxiety! I also grapple with shortness of breath, and as you probably know the anxiety over breathlessness can makes you more breathless, a vicious cycle. I have learned breathing exercises at PT, most of which involve breathing through your nose and consciously slowing down your breathing. This requires effort but I think helps. I have not had other prof help although sometimes I think I might need it.
My experience at NJH reflects what others have said. I had surgery last summer out there at their recommendation, Tbe care was excellent and I believe it was the right thing to do. Coping with the aftermath at a distance has been more difficult.
The truth, as others have said, is that they don't really know the answers often with this disease. But they do know more than most other docs. I decided on this trip I have to find a team closer to home. It's good that you have someone local to see who is knowledgeable. Good luck with everything.
Chris