I heard back from the pulmonologist. He went over my echo report and other test results with the cardiologist and cardio strongly feels that my SOB is not cardiac or PH related. He said that even if I *do* have PH, it is very mild and not the cause of my symptoms. He will do a heart cath if I want, but he does not think it will show anything different.
Lung doc wants me to try an asthma inhaler during attacks and see if that helps. I've had asthma before related to worsened allergies when I worked in a "sick building" that has since been demolished and those attacks were nothing like what I'm experiencing now. The asthma went away when we moved locations to another building. But I'll try it and see if it helps.
My biggest worry is that this is the CML. I had these same symptoms before diagnosis and it went away after I started Gleevec. I have never achieved cytogenetic remission and I am 18 months post-diagnosis and it took me this long to get FISH down to 1.8%. BCR-ABL at 18 months was 3.5%. Onc is willing to go up to two years before switching meds unless there's a big jump before then. But it scares me - I always thought you HAD to get the BCR-ABL under 1% within the first year for long-term survival.
