I Stand By My Previous Statement…

Because the cardiologist was pretty confident breathing difficulties would mess up my cardiac stress test, and that would yield less than reliable output, I had to do that injectable crap. Now, it was short lived, but massively unpleasant.

The cardiopulmonary test I had yesterday required that actual exercise be involved. I stand by the statement that I much prefer the exercise to the nasty injection… even though the exercise involved a radial arterial puncture (which… well, we got one. The second, post exercise one… they couldn’t get my artery to not roll away).  One thing is for damn certain, they make the bike seats for people who are a much different shape or size, or even possibly a different species than I (ergocycle, my ass! No really… I can’t feel my ass but for the huge, gnawing pain in my spine).

Here’s what I do know: My oxygen behaved. Okay. And evidently there’s no sign of any shunting in my heart. I also was told I have amazing lungs prior to exercise, like… the lungs of a superhuman (actual words spoken by medical professional). I was put on the bike, taken off the bike (was able to continue until the doctors told me it was now time to stop, as I hit the target heart rate — and then some — and they had enough data) and told again first that my lungs before exercise are superhuman. Afterwards, though…

I said, “Am I just average after?”

I go from superhuman to… um… not average. Now, I am not sure what the hell that means, and I wasn’t going to ask. Did it mean, since I had pretty damn amazing lungs that they dropped to a point that was a more radical reaction than they would expect given how good they seemed beforehand… but isn’t exactly a bad outcome? Or did I go from superhuman levels to that of a nearly dead lungfish? I know there was some consternation about one set of post exercise breathing tests, along the lines of “did we do this right?” I gather they did, though, because the next tests were within the percentage value of what they’d consider viable information.

So the upshot I walked away with was that I am not gushing blood where I shouldn’t be, and that my lungs and heart are both working basically as they should, or at least are still being brave in the attempt, but something is tweaking them off.

Since death wasn’t imminent, I was ignored as seriously thirty thousand doctors (okay, more like five, but whatever) huddled around the machine. If it takes that many doctors to print the results (which looked to be a good 30 or so pages of data and charts and bull), I hate to think what it must be like to go through it all. I was told the calculations will be done, matched to EKG readouts and blood gas results and by Thursday they should be able to at least suggest wherein the problem lies. My  guess is outside my lungs and heart, which means either blood, or muscle… Which isn’t overly surprising, and any of those things will have its own unique pissy factors.

My thymus has to be a clue, but one that muddles things. Is it a neurological/immune thing? It isn’t myasthenia gravis, we know that, and at the very least, this wouldn’t be worsening after it was removed. It might not get better, but it wouldn’t be doing this. Is it a weird insidious malignancy? An anemia or blood problem? I mean, all these things are associated with thymic tumor growth action.

Is it none of that directly? A lot of weird, genetic or combination genetic/acquired neuroendocrine or lipid storage/connective tissue stuff tends to start spewing out odd systemic, hard to explain symptoms and cause tumor growth.

I don’t know, but we can do something about it soon. Really. I mean, no, really. We can.

Also, my diastolic blood pressure was a lovely 105 throughout the test (it was 94 when I walked in). I mean… that kinda makes me wonder. The systolic wasn’t nearly so bad. High, yes. But that one is supposed to change during exercise, and go upwards.

I suspect they saw something that seemed a little off, but obviously what that is is going to take some pinning down. I sort of knew that, but I don’t know how I can relay the idea that three to five weeks between tests with no way to relieve or help the situation or otherwise keep things from deteriorating further is completely unfuckingacceptable (not an f bomb if you sandwich it in a word.)

If they could have turned the wattage down on the bike a little, I would have tried to keep on. I miss doing that. I miss moving. The bike seat though… yeah, I can totally do without that. I know why I like recumbent bikes with sort of normal padded chair like seats… I feel like the bruise on my spine has to be a lot more colorful than the one on my wrist where they drew the arterial blood…


This entry was posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with, Not Otherwise Specified, The Bad, The Good, The Ugly. Bookmark the permalink.

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