Whoa! Very different than what I was told by my CF doc: you have exercise-induced pulmonary artery hypertension as well as left ventricular failure. Easy to see why Dr P's diagnosis was preferable, no?
After hours of online research and asking questions of basically every medical professional I came across, I had the name of another cardiologist: Dr S. who runs the heart failure and transplant clinic at MGH. He conducted a study involving the level 3 Baird and cystic fibrosis patients several years ago which was published in the medical journal Chest. The down side is that he is extremely busy and difficult to get an appointment with. Needless to say, his secretary and I are now on a first name basis; I called at least once a week to try to get into a cancelled appointment slot. My persistence paid off and I snatched up today's opening.
Basically, he said he didn't have a clear picture of what is going on with me. I've stumped the best of the best! He was concerned about my blood pressure, especially when I exercise, when it topped out at 210/112, much higher than a normal person's. The pressure in my pulmonary capillaries is much higher than normal as well, 50, when it should be around 12. As if this wasn't enough, my left ventricle doesn't pump or relax properly and this in turn affects the right ventricle. Cardiomyopathy or heart failure. Oh, and a small PFO.
However, despite all the cardiac abnormalities, he doesn't think my shortness of breath is heart related; if it was, I wouldn't feel better using the oxygen. Not only do I feel better, but my O2 saturation is much higher when I use the oxygen. He's going to need to confer with my pulmonologist in order to discuss this and come up with a plan.
As frustrating as it is not to have a definite cause for what is going on at least I feel that I have the very best minds working together to figure it out. I suppose in the end it doesn't really matter whether the root cause is cardiac or pulmonary; my personal theory is that it is a combination of the two. In the meantime, I'll continue to use the oxygen for activity; I'll keep up with exercise, and (this is going to the the tough part!) cut down on my salt intake. I'll wait to hear back about anti-hypertensives and just keep on keepin' on.