What We Have Here Is A Failure to Communicate

Some medical terminology is so awesome. I like immune system derangement. I like when something that is absolutely life threatening is described as “inappropriate.” I also like the fact that heart chambers and lungs actually exhibit diplomacy skills insomuch as they are described as communicating with each other (whether or not they’re supposed to, eh. Wikileaks, mitral valve style!)

Anyway, so I get my echocardiogram and bubble study done. Echo sonographer questioned why I was having a second bubble if we knew I had a hole… Evidently, though, it isn’t uncommon when hospital systems have a failure to communicate that tests have to repeated. It’s stupid, yes.

So here’s the deal, so far as I can tell. You know, it’s always a little squenchy when the doctor calls you back and doesn’t know quite where to begin. I have a feeling I missed some key information because of… well… I think there are blanks to fill in all round still.

I do in fact have that little teeny hole. It is teeny. They saw it, I think even without the bubbles, but the bubbles let them know that really, the hole is not my problem. The pulmonologist was curious as to whether it was worth measuring the hole now (or even in the future) based on what the cardiologist saw, and it was clearly not.

What I do have, apparently, is some failure in communication between my heart and lungs. What does that mean? How the hell do I know? Actually, since my heart seemed normally sized and not overly thick or weirdly shaped or anything, and because my lungs are pretty damn okay, I am guessing that means the arteries that go between them are being snotty little jerkwads for whatever reason. I guess this was something they could see on the doppler… But my heart is basically okay for now and doing what it should with what it’s being given to work with, as are my lungs. So my problem is somewhere in between.

I suspect that they are thinking some form of pulmonary hypertension (maybe, I mean, these little episodes did precede my blood pressure going sky high by a year and a half or so, which would kind of jive) I guess it could be something else, or it could be there’s something squishing they didn’t see on the imaging (the countless freaking pictures they have, actually)… Usually stuff that causes scarring and inflammation and such stuff causes that kind of thing in your lungs (okay, outside your lungs)… So it wouldn’t be beyond the pale to see, as weird as my history has been, this sort of crap happening. A lot of adults with histiocytic stuff (or any odd blood or immune issues) of various flavors and colors have weird fibrotic and stiffening things happen, sometimes in the organs themselves, sometimes just in the areas all around them.

So I get to go do a stress test that involves an echo at either end, a lung test and the usual old cardiac monitoring during the middle. Since my heart is okay, and my lungs are too, and it’d be awesome to keep them this way as long as possible, it’d be nice to figure out where my issue is from. If we could, we could stop things from happening like, um, heart failure. I understand that this would be a real possibility (both that it could be happening, or happening soon, and that it could be prevented or minimized if we can sort out why. It can probably be minimized now that we realize that we have a damn problem. Finally. Jeez. Sorry. And it’s no one’s fault… it actually really does work this way. This slow. I don’t know if that’s comforting or not. Nah, but at 38 years old it sort of is. But not really.)

So I was going to the cardiologist out here in the suburbs on Monday, but I think given the overall picture now, it might make more sense to do in town. First, though I like this cardiologist out here, I couldn’t stand the local pulmonologist, and the dude at the Brigham/Farber is really so nice. I also sense this is more going to be a vascular/hematology thing than a purely pulmonary/cardiac thing, and thereby weird, and thereby… I might as well be where I know the doctors know I’m weird and have the means to make the connections to other doctors who enjoy weirdness (which my poor GP has been butting her head against for years… I adore that woman. I have no choice but to push through this crap and get something figured out… she had a choice as to whether she wanted to continue to work with me. I will love her forever for this. Of course, same goes for Mr. Shoe, you know.)

Of course, I asked how long this test took to schedule… I told the nice pulmonologist that while I’m not keeling over, this isn’t at all pleasant or right and I can’t do this much more. He said if it was more than a week and half out, let him know… He’d see if he couldn’t make some stuff happen.

It’s scheduled. It is more than a week and a half away. The scheduling lady let him know, and I’m going to call him as well. I think the sticking point is it is done one day a week, in two time slots, because it requires a few different trained medical peoples to do (think, echo, probably some radiology nurses, cardiologists, pulmonary techs at the very least). I do not know if he can work this magic, but if he can’t, I’m going to ask if he has any ideas what I could do that might make the next month or so less unpleasant. I worry most about losing what I have left here, and a month is a long friggin’ time. It won’t kill me, but it might make it worse. Pushing through the pain and heaviness is not really making it better. But I get bullshit at it so I do, and then… I am not helping anyone that way.

The rule: nothing is ever simple. Ever.

At any rate, a word for my mom: They will do something to make this easier to live with at this point, because they have to. It might not work or nuthin’, but there’s no way that ethically they can’t tackle what they are seeing even if they can’t put together why it happens exactly.

I did have my propranolol bumped up. Can’t say it is doing much for the blood pressure (yup, still causing people to bleed out when I look at them) but my heart rate is down a little, which at least is less crappy feeling. I don’t have any more difficulty breathing so I guess that’s a start. They can do more, and I do know this, even though I kinda doubt this will be clearly fitting into a still very pixellated but pretty clearly present bigger picture any time soon. The bad news is the good news: they have to, because if they don’t, we are all in for a world of hurt. But I also know that at this stage, this is stuff that even simple interventions can have a pretty positive impact longer term.

My flow and pressures are high, but I am not deformed. Oh, stop laughing… or I will make your retinas detach. Don’t think I won’t.

This entry was posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with, The Bad, The Good, The Ugly. Bookmark the permalink.

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