I had my exercise stress test yesterday, one of the test I really dislike, but was happy to have it as it shows if I have any improvement in my heart function.
Heart function when you have heart failure from cardiac sarcoidosis does not improve. At least that’s what I was told. It generally gets worse. The week after I was fitted with my defibrillator, my heart failure specialist was talking about a heart transplant. I told him that my heart would get better, and he just smiled at me with that “living in denial?” look.
When my heart failure was first discovered, my ejection fraction was less than 25%. One year later it was at 30% and two years later it was at 35%. The many specialist I see were dumbfounded as it never happens. Heart failure from sarcoid never repairs itself. Yesterday, my echo at rest at first revealed an ejection fraction of 57%! The technician said that was way to generous and re-tweaked some measurements manually, and the computer then said an ejection fraction of 45% at rest. Good news. I wish I could have taken a photo of her face when she saw that. She then went through my file with a perplexed look and looked at the results again. Then said “Well I’ll be. Never saw that before”
Then came the exercise portion of the exam. I walked on that treadmill until my heart rate made its way up to 147 bpm. First bad news was that oxygen saturation dropped to 75%. I went onto the exam table and got the second echo while panting like a fish taken out of water, and the doctor had the tech check my Pulmonary Hypertension. None. Yeah! Second good news. That means that the Tracleer, that $6,000 a month medication I take for pulmonary hypertension is working.
Further testing of the heart after exercise however revealed that the heart is not beating properly in exertion. Second bad news. Why? One thought is that it the scaring on my lungs and the lungs may be getting stiffer, causing the heart to freak out. Or, the heart just may not be functioning properly. That means I am off to my pulmonologist on Monday to see where we go from here, if any.
Last year my sarcoidosis specialist mentioned about getting a lung transplant. I hope I am no where near that stage now. I now wait until Monday to hear what’s next.
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