All Right, Let’s Give This an Updating Sort of Go

I still don’t trust my browser. But I trust it more now. Cough.

Okay, because I know I left everyone out of the loop, really, and because I know that sometimes it’s better if I say it and then it’s read by people directly, because it is all confusing and just gets even more disjointed as it passes through people’s minds (like Telephone, remember that game? It’s the game that proves either all your friends were deaf in elementary school, or else they were screwing with you… It’s a toss up) I know it’s time to at least somewhat catch everyone up.

So near the middle of July I’m getting another transthoracic echocardiogram with a bubble study. Yay! I’ve had one… I’ve had a few. I had one three years or so ago, and then a transesophoegeal one several years prior to that. Mad points if you can remember why and the history behind that… What, you can’t? Right. It’s also why the pulmonologist at DFCI was like… “Oh, jeez. That might explain some of it.”

Well, here’s the thing. It might, now. It might not. It might be overall related in the big picture if you consider the big picture is that something went pear shaped somewhere with me, but maybe not all directly, or clearly. Obviously, however, I feel shitty in no small part because of what I am feeling in the chest/airway/blah blah area and it is having an effect, and truthfully, isn’t something you ignore.

Everyone ignores this stuff. No, I mean…. because it isn’t chest pain. I mean, it hurts, now, after years of just feeling like I had the wind knocked out of me. It hurts sometimes, mostly in my throat. It is the sort of thing that in the beginning would happen, pass, and it didn’t kill me… and good lord, you don’t mention chest or breathing issues to anyone if you’re a woman. Sorry. Why? Because it’s anxiety. I mean, fine, guys hear it is stress related (do you have any stress in your life? What the hell kind of question is that?) but generally something gets done that isn’t like Xanax, you know?

Oh my god. My browser just crashed. You lousy piece of… Stress! I wish I were kidding there.

So anyway, it isn’t really pain, or constant. It is uncomfortable and inconvenient, but less inconvenient to suck up and live with until it becomes… normal.

As you may recall, I have had migraines (I have had fewer in the past year or two, actually). I have had “Oh my god, do you need to sit down and have a cookie?” low blood pressure. I don’t have low blood pressure any more. That’s for damn sure. But the migraine stuff lead to the transes– they shoved a transducer for an echocardiogram down my gullet and did a study.

I was told it was normal. It was, and it wasn’t. Three years ago I found out it revealed a really small patent foramen ovale — which the transeso– studies are good at picking up. So, this PFO thing is really very common. I guess damn near a quarter of the population is thought to have one. They don’t do much. You don’t need antibiotics (I finally learned) prior to dental work with them, they just sorta sit there. Most of the time. Basically your foramen ovale is a little hole in your heart that is supposed to squish shut a few weeks or months after you spew from your mom’s loins (hi mom!) and in a lot of people, it doesn’t happen. It stays open (patent).

Again, not generally a big deal. Babies who have this might also have other, far more freaky, scary, imminently worrisome heart issues. I didn’t. I guess people with migraines supposedly have a higher incidence of it, but I don’t know if that’s just because migraines suck ass horribly and no one can do much for them, and the doctors feel like maybe if they look they can explain it or make some sense out of it if they can’t fix it. That’s a valid feeling, not sure if the data is as valid, really.

I survived childhood. But for the fact my heart goes really very fast, and I lose oxygen saturation and have a penguin sitting on my chest most of the time lately and activity really wants to piss breathing off (which being inactive isn’t going to help either… damn you Catch 22!), my heart and lungs are allegedly pretty healthy. My blood pressure, which used to be oh my god low, really isn’t anymore. I mean, it really isn’t.

Blood pressure is something that can affect how a PFO behaves, but not so much as you’d think, I gather… More it seems that aging and the fact that sometimes, some people genetically have a PFO that becomes an asshat later in life (dudes, not to annoy you, but my browser crashed again. I am bull.) Sometimes this tendency is linked to other genetic asshattery. Sometimes asshats happen. Generally, the asshattery hits around the age of 40, and sometimes it is only caught after a few emboli have been thrown around (I think that is the best term… I have seen this in publications here and there, “throwing emboli.” Like my blood decides to pop a cap in my lung or something, it sounds all gangsta.)

Annoy you again… my browser crashed, third time. This is why I haven’t been so hot on updating. I can edit photos fine. Dammmmmmmmit.

The only time we tend to worry about the PFOs are if there are a few strokes or whatever prior to age 50 (yeah, I know. I mean, that’s a big deal.) or if someone is turning blue, mottley and having difficulting breathing either on or off exertion or for no reason at all… Because throwing emboli can start out very small, in very small veins, and not be overly dramatic. It looks like Raynaud’s (right) except whenever you move… Um. So the thinking comes back around to maybe the PFO is being a noodge and causing some of that stuff — and my browser went again. Right. Maybe this is Mozilla’s goddamn fault.

This was suspected once. Then discarded. It isn’t often a PFO, as common as they evidently are, do this sort of stuff. When they are naughty, however, they do.  And given the high blood pressure (Shoe, were you aware that your blood pressure is high enough to blow my head off from clear across the room? –Yes, doctor, yes I was.) and the cyanosis and the shortness of breath and the fact that climbing a single flight of stairs is a measurement of how okay you are to function… and I failed to a certain extent… This needs to be checked first.

If it is unrevealing (it could be, and I’m not sure what exactly would make them say, Aha! beyond bubbles where they ought not to be) I get more testing, which might just end up being the same in the end. This is stuff they should be able to deal with, either by stopping up the hole with bubblegum or anticoagulants or whatever.

Okay, and crashing again. I am finishing this up, because my life is too busy for this crash report bullshit and I don’t even have anything I have to do. Except ditch 64 bit Kubuntu now.

The pulmonologist also suspects (due to my history and feeling my neck up and stuff) that there is some issue with my throat. Is it metabolic, or neuromuscular or swelling related? Dunno. Neither does he. They could all fit, and wouldn’t necessarily clash with the histiocytosis/overgrowing stupid cell stuff we’ve seen. But the echo comes first, because if we can keep some of the potentially nastier stuff at bay we might be able to make life more pleasant and get a clearer grasp on what is or isn’t related to what. Give a gimpy person enough time and all sorts of unrelated stuff will hit the fan.

I need to remember to tell the pulmonologist about the drooling. They ask about swallowing issues, and I never remember that actually is a swallowing issue. I know, ew, right? It’s also like a “get a mop and a wet floor slipping danger” sign issue, but hey.

Until then, keep activity light… which sucks ass when it is coming from the mouth of the guy who said “You can’t do a flight of steps without this happening? Urg.”

I totally bet I can throw this laptop across the room without any trouble. I totally want to.

 

 

 

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

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