A Post Surgery PSA

I was putting together a much longer spiel, but honestly it just evokes a whole lot of stuff in my mind that runs from “really humans know nothing about how they really work” to “why the hell am I so stupid?” (To answer the second question, because no one likes to really accept that they’re mortal when the fact is shoved all ugly like in their face even if they know ignoring the issue will kill them.)

So here’s a public service announcement for anyone who is considering a thymectomy or knows someone who’s having one soon. It’s a pretty safe operation all round, although the different approaches have different risks and recovery times involved. I think the beauty of surgery must be the mechanical nature. Go in, grab it, carefully take what you are able, and get out.

That part went swimmingly for me. (A side note: many people and doctors opt to wait. Long term benefits are still pretty debatable, it seems, but if the rogue thymus keeps growing,  looks suspiciously cancerous, is making your voice all hoarse, scratchy and chain-smoker-esque, or you feel crappy but no one can explain why, it’s worth it. Okay, I did it mainly because of the last reason, and because it was large enough that it was in fact causing my scratchy lower throat feeling.)

What you don’t tend to hear about is what comes afterwards. It’s not a conspiracy, sorry. It’s just that the procedure is done not so often and on a sort of weird demographic (hey, call it as I see it. I am one of them) so really all sorts of things could happen. It’s odd, because an adult’s thymus basically sits there and feels self satisfied that it has taught all those other organs all it knows, for better or worse, about running an immune system. It’s also a neat little connector between the immune system, the endocrine system, and the central nervous system. In an adult, it does nothing. It shouldn’t even be visible.

Because it sits in the center of things, though, it is not unheard of for organs and hormones and neurotransmitters that go about wreaking havoc upon your body to suddenly realize that their demonic mentor is gone, and decide to exact revenge upon your carcass as a whole.

So let’s put it this way: When it’s out, it ain’t over. And it ain’t over might mean more than just continuing any immunosuppressants or neuromuscular sorts of medications. It might mean your brain stem makes a credible attempt to kill you. So if you feel a little more off after surgery than you think you should (or, as in my case, it doesn’t hurt at all but you can’t figure out why your shoelaces aren’t tying themselves, the lazy bastards) please see your doctor immediately. Make them check the post-surgery blood labs, and make them re-run those tests.

It sucked, but one of those tests very likely saved my life last week. The reaction I had, while not common, also suggests certain types of involvement that might help the doctors interpreting the pathology report (thymus pathology reports must be hell. I bet pathologists hate doing them).

A reaction that nasty is probably an outside chance for most people, but I think it’s probably wise to expect little uprisings for the next few months as various parts phone home and realize they’ve lost a comrade.  They need to smarten up though,  or they’re getting yanked too. I am not being taken out by a gland the size of pea, thank you. And neither should you or your loved ones.

For the record: Yes, I am feeling a lot better. For instance, where they cut in and moved things around actually hurts now. I taught a lot of health care professionals that apparently you can have a blood sodium level of 125 and still almost sound like you are holding up your end of the conversation, shoelaces be damned. I learned my pituitary gland can still make ADH, when it wants to — which appears to be randomly in gargantuan amounts. I learned that I fake it so well I fool myself.

I am also being a lot more diligent about keeping an eye on those little glitches.  Right, low serum sodium is a big friggin’ glitch, and I expect that there will be some others, but it’ll be more along the lines of more frequent random wobbles for a while or overreactions to heat, light, and cold. That almost equates to more of the same, I know, but there is a slightly different intensity at the moment.

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I've Been Tagged

Last Friday they sprung me from the ICU. Here’s what we now know: my thymus was enlarged (hyperplasia) as opposed to sporting a tumor. First glance looked very much not cancerous, so it’s off for testing this week. I should hear on Thursday, when I see the surgeon to have the stitches removed.

Hyperplasia means there’s a damn good chance we’ll be able to pin this trouble on some kind of autoimmune process. I know that as much as I adore my endocrinologist, I’m going to have to get one within my GP’s network. The whole diabetes insipidus thing confused the living daylights out of the “normal” nurses, scared the living crap out of the anesthesiologists and surgical nurses and ended up ultimately getting me acquainted with an endocrinologist at the hospital. It’s more than a little surreal, though… I mean, I know she was being diligent about making sure this wasn’t a complication, and I’m sure she was really curious to see the woman with DI and no good reason for it. Except… it started to be like Frank the Bunny in Donnie Darko. Every time I looked up in the ICU, here was this mysterious endocrinologist.

They marked me for surgery (which I thought would be illustrating where to cut — it ended up being the surgeon joyfully scrawling his initials on my shoulder in blue marker) and in about three hours it was over. Drainage tube was more unpleasant than I could have possibly imagined (the catheter wasn’t, at least). They attempted to give me an arterial blood pressure monitor while I was still conscious, but the good news was the nurse realized I was about to pass out before I did. The incisions don’t hurt much, but believe me, whatever this is is really ticked off we went in after it…

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We're Off to the Races

I was composing a nice lengthy response to Momshoe, and I realized that stuff has happened that might be worth an “up here” post.

So the run down:
After further meetings with the anesthesiologists and such, it’s a little freaky. Especially since I get the impression that the rheumatologist I saw — who did indeed call me back — wants absolutely nothing to do with it. But for once, thinking about the long term scary implications is far better than thinking about the short term ones. Things I wish I didn’t know, but am kinda glad I do: My throat will hurt more than the usual post-anesthesia scratchiness, because they use a much bigger tube. I am glad I know that. They use a bigger tube because they have to deflate each lung as they work in its general area. Wish I didn’t know that, except it does minimize risk of nicks and cuts, which I am glad I know.

Anesthesiologists are all glad I told them about the diabetes insipidus (I had to push to see them… nurse who did admissions testing assumed it was a blood sugar/insulin/pancreas related thing, not a “patient could dry out because they don’t make this antidiuretic hormone and then lose blood pressure and have heart failure while they have one functioning lung” situation). Endocrinologist cleared that I can take the fake antidiuretic hormone that morning and anesthesiologists now know to keep an extra close eye on that and administer it again prior to surgery.

Surgeons are treating it as though it is myasthenia gravis, so they’re using a nerve block in place of muscle relaxants during the surgery. This makes me happy, because I had such a bitch of a time last year when I was having this same sort of problem, and the idiots in the hospital insisted I was anxious. They could tell by looking at me (I kid you not, they said this before they pulled back the curtain and laid eyes on me the first time). I said I wasn’t. Mr. Shoe said, “I call bullshit [I know, Momshoe, your angelic son said that to a doctor who I don’t think was old enough to drive]. I’ve known my wife for a long time, and I’ve seen her anxious. This isn’t anxious. It’s her trying not to throw something at you.”

Anyway, the idiot doctors that time prescribed Ativan because I was obviously horribly anxious. I took it to shut them up, and hoped maybe they were right. Except… it got harder to breathe. Much harder.  Ativan isn’t a true-blue muscle relaxant, but when my muscles aren’t responding right mostly anyway, it didn’t help. And muscle relaxants are bad when you have muscle issues associated with thymomas, I’ve learned.

I am fortunate that my surgeons are bright, and knew this. Before I asked.

So I go in next Thursday (Feb. 18th)  around noon. I guess the whole deal takes a few hours, and then, because they need to be sure my lungs reinflate right and clear and everything’s hunky dory, I spend the night in the hospital. They usually stick you in ICU, unless a horrible convergence of events leaves no vacancies there, because there’s a higher nurse to patient ratio, and this is one of those things they prefer to err on the side of caution. The next day, they decide whether I can go home… I guess based on lung inflation and function and drainage behavior (there’s a lovely thought…)

Because what they’ll find in the tumor pathology could point to auto-immune mediated neuro-muscular, straight up autoimmune issues,  neuro-immune-endocrine issues, bizarre blood issues, or a horribly confusing combination thereof, we then wait. The rheumatologist I just saw seems about as uninterested as humanly possible — and it’s obviously not going to be textbook from here, because there’s no freaking textbooks — so I need someone who actually wants to think about it. And that, friends, family, Romans, countrymen, and chocolate enthusiasts, is so much harder than it looks.

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Say Hello to My Little Friend

I knew the past two weeks were going to be less than fun, but you know how it is: brace for the worst, hope for the best, and then something that you wouldn’t have ever imagined in a million gazillion years happens.

Last week I got my repeat chest CT to follow up on that little nodule that they spotted last year. Monday, Mr. Shoe saw our lovely GP who said “By the way, tell your adorably wonderful wife that the report came back and the nodule is unchanged.” Tuesday, I saw the rheumatologist who I realized I wasn’t giving a fair shake. My records got sent to the wrong office, so I come in to the visit and he sees — me. For what that’s worth. And then he makes the (very logical, and very correct, but so not the heart of it) pronouncement that I have a sleep disorder that must be taken care of. I said, “No duh.” I did. Because I knew he wanted me to say “No shit, Sherlock!”

Needless to say, that’s one of those things that makes me defensive now. And I am used to being just dumped when it’s not all apparent immediately. I wish (as does my sleep doctor, who is very good and who I see every two to three months, dammit) that instead of fighting with me about how badly things are managed in that department, they’d call my sleep doc and tell him how to do his job, because obviously specializing in neurology and then sleep medicine didn’t learn him nothin’.

Wednesday morning, I call my GP to let her know that I think I need to give the rheumatologist the chance, in good faith, to prove he’s not like the jerks I have seen here and again. Oh, and please resend my records. My GP wasn’t in yet. But when she called at noon, I figured she’d gotten the message.

She said, “You know, I got the full report from your lung CT.  Your nodule is the same, but… there’s something else.”

There’s this gland in your chest, I guess (anatomy lesson time) that is huge and active as a fetus and throughout childhood and adolescence, and then it shrivels up and stops working when you are an adult. Some people have it basically disappear, some people have just a really little one. Some people, people with things like myasthenia gravis or neuromyotonia or blood and autoimmune disorders have something happen where it stays enlarged — or it develops tumors.  It’s called a thymus gland, and it kind of shows your immune system how to get going and work when you are young, and then, when you’re old and decrepit, it quits and lets your now oh so knowledgeable grown up parts manage your immune system.

My thymus has a growth. Because of its jackassedness, and (while not all of these things are cancerous) they are classified as malignancies, I named him Don Thymus.

What does this mean? Well… We don’t know really. The surgeon thinks we will. Don Thymus will need to come out (he’s about an inch and a half around). The surgeon says it doesn’t look cancerous, and given my history, is likely going to yield some kind of clue as to how to treat this thing as we go along. He says at this point, he doesn’t think removing it will help my current state greatly (although, sometimes it does help keep things away longer and requires less management on other fronts), but he is pretty confident that we will learn something worth knowing from pathology testing on Mr. Thymus.

In other words, it’s really bizarre to have one of these things pop up… they’re only present in a small percentage of people with autoimmune stuff. But if it isn’t cancer, and I am having the problems I’m having, it’s almost certainly a damn big piece of working it out and getting under control.  The chances of it happening, my feeling like I do, and it not being related are pretty slim.

Not sure when they’re yanking it. It’s an overnight thing, and the surgeon’s sure he can get it on the first swing (and he says two minimally invasive surgeries beat the crap out of one splitting open of the sternum… and I think he’s on to something there. I like my sternum intact, please). The pathology testing will take some time, and because it is considered malignant just by being there (but it’s a benign malignancy, sure, makes loads of sense) it’ll be staged, as well (with a top hat and tails). After that, some rheumatologist (will it be this last guy? I don’t know) will take over management.

Betcha didn’t know you had a thymus. The actual growth is loosely termed a thymoma… which makes me think of Shakespearean “Yo mama” jokes. “Thymoma’s eyes are nothing like the sun…”

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Want an Update?

I sorta don’t have one. Hey now!

The immunologist I wanted to see is no longer seeing patients, so I was plopped in with someone I saw previously — once. He’s… Well, truthfully, for a much older guy I was surprised (back then) how empathetic he was. And there was a lot less to go on then.  I am pretty ambivalent, honestly — but really outside the community hospital it comes down to picking a name out of a book, and that makes known ambivalence a preferred course, I guess. Because it’s clear the community network of specialists isn’t really the way to go.  It’s also a lot longer wait to get in in the community.

I haven’t heard on any labs (including the X-ray of the fabled kneelings)… which could mean they’ve all come back negative, which wouldn’t be a surprise at this point, or they’re not back yet, which would probably be a better scenario for figuring things out.

I have been trying to write, with some success. Mostly, though, it’d be cool if this’d just like…. get itself behind me.

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I Think I Did This Right

I made the right call. Truthfully, every last doctor in this area goes through the practice I just left and says that it’s a bureaucratic nightmare. That was my problem. My doctors have the hard part. The paperwork (or faxing and email thereof) should not be the hard part.

I love my old new GP. I still do. I said to her that experience — loads or not — is meaningless in my case because… I’m what I am. And at the very least, she knows me.

There is something wrong. It’s obviously systemic, it is (or was) autoimmune in some stage, and it’s not going to go away.  I am getting my follow up chest CT (just to check on the lungling), a knee x-ray (to check on the kneelings that are growing) and a mammogram, because glow in the dark boobs are awesome.

I had lovely blood draw last night, and I get to wait to hear that probably everything’s disturbingly normal, even though my face was bright red, my hands, feet and legs were blue, and I had various swelling bits.

But this is starting to be such the same animal every last time… The context is really important, and a GP who knows and has seen the thing go down…. And is ready to put this behind her too (in a positive way) is a good thing.

Let’s just hope momentum swings in my favor.

Or even for a logical given the signs lab report — but I kind of stopped counting on those ages ago.

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Second Verse…

I just went to see my sleep doctor. This is the time of year when what ever this is flares up, and my sleep doctor has doctors in training come through.  I could tell halfway through this poor guy this time was just feeling useless… I think he at least had the sense to realize and be happy he had a fallback in my sleep doctor.

He suggested the… well… obvious. I don’t sleep well at night, and then I am tired, and it’s all circular. See, drug induced sleep and wakefulness aren’t natural, they aren’t like when it just happens. God help me, I know. I know. I don’t want it to be this way, I don’t think it has to be this way, and I think pulling back on that stuff right now will ultimately end up making it harder for me to make sense at appointments (or make it to them at all) and they’re only a small part of a much bigger issue. It’s just easy for everyone to take shots at that because that’s all that’s being done.

The regular sleep doctor did indeed back me up on this.

I have an appointment with my former GP tonight. As in, the one I had this time last year. I like her. I feel for her. I really do.  I just hope we can figure something out, finally.

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Well, There's Good News, And…


So, well, first the extraneous stuff. My dad was kicking serious ass after his quadruple bypass, but because my dad is… well, part of my family, his blood pressure wouldn’t come down. Except when he was exercising (yes, we’re all busted. Fine.) So the doctor prescribed a teeny dose of an additional, very benign and gentle blood pressure medication — I think he must have had cause for concern, cause he seemed to put the fear of god about it in my mom.

My dad had a seizure a couple days before New Year’s Eve.  He didn’t have any cranial bleeding, and hasn’t had another since that time. That’s a good thing. That medication was stopped. Ahem. But you don’t know till you try. And he’s still kicking my mom’s ass on the Wii.

I am having an easier time with vertigo… but only because my head seems to have stuffed up. Actually, it’s so disturbingly back in the same way it was this time last year I want to scream. I am very glad I had the beta blocker upped, though, because at least it keeps the freakin’ tachycardia at bay. Well, mostly.

But because my hands are killing me (and my knees are deformed… it’s actually really gross)… This’ll be short. I am hopeful (how bad does this sound) that blood tests next week’ll make the right people look at things properly. I don’t think I can afford another year of waiting… I had a follow up with the freakin’ awesome endocrinologist, who took my blood pressure and looked at my mouth and said, “Get your blood drawn, but nothing says that you’re out of whack, and I’m going to increase the desmopressin to three times a day.”

Serum sodium was a little low. Obvious thing would be I am drinking too much water… but I could tell when the endocrinologist called he wasn’t convinced that was it (it was low enough to be remarkable, but it also should have shown in my vitals at that low a level).  He said to please go ahead and take the extra dose of desmopressin, but be careful as I wouldn’t want to throw it off more accidently.

I just have to pull through till next Thursday. And hope against all odds that finally blood tests’ll be revealing, because I’m seriously getting deformed (and zombie colored, which is only cool for party tricks)… Because even if my bones are jabbing out of my skin, an X-ray is needed to confirm that it’s not a damned illusion, it seems.

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One Bad Ass Pigeon

So this smily guy (or girl, I didn’t ask) was out on our pussy willow bush/tree this afternoon (yeah, it’s a really well established pussy willow. It’s a damned tree).  I was heading out to try to squeeze something out of Penny real quick because it’s cold as sin, and I happened to look out and think, “That pigeon looks completely bullshit.” Then I realized it wasn’t a pigeon.

I got Penny back in the house (otherwise, she’d lick the metal door and stick to it. I kid you not) and went diving for the camera, hoping that I had the batteries charged. It matters really not at all, given that batteries aren’t any good when it’s 15F outside. But I did manage to snap a couple of pictures of this lovely birdie.

I’ve seen bigger hawks and stuff flying around, and saw one about his size take a pigeon off the neighbor’s house last spring — and a couple of years ago the neighbor saw one take out a sparrow in our bamboo. But this guy was sitting (he was not frozen to the branch) for a goodly amount of time while a bunch of  (considerably larger) crows went crazy at him.

I’m wondering if the stuff dripping off the roof of the three season porch is blue jay droppings or blue jay remains at this point, though.  And is it bad that that idea makes me really want to fill the bird feeder? Who needs the Discovery Channel?

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Two Good Bits

If you know me and you’ve got a pulse (and if you’re reading, I’m kinda hoping you do, otherwise, that’s creepy), you’ll know this year has been a large pile of steaming suck. With an olive on top, because I think olives taste like — well, olives, and that’s the problem.

But two good things happened this year, and I guess that’s something. But let’s start at the beginning of December last year. I was feeling decidedly crappier than my normal crappish state, I had been for several months, and I was trying hard not to acknowledge that. I was not the only one.

Mid-December we lost our little bastard of a pekingese, the nearly 14 year old Monster. As always, the little git was impeccable in terms of timing and “is he going to pull it off again or not” that he was known for.  I was surprised that Christmas was as oddly pleasant as it was last year. The now-elderly Norman (poor guy) was thrilled to see my parental’s Westie for once, and we brought out Wii up.

Of course, seeing how Norman perked up in the presence of another dog made us realize a new brother or sister for him would come sooner rather than later. And my parents loved the Wii.  My mom liked skiing with the balance board (my dad only tried boxing and then resorted to bowling and golf on the Wii — but I’ll get to that).

So shortly after Christmas all hell breaks loose for me. In February the doctors declared my dad had angina and scheduled him for an April stress test. In February we brought home the lovely little pug lady, Penny Glottis. Norman finally felt right with another dog to ignore — a dog who definitely doesn’t give him PTSD like Monster did.

In April, during the aforementioned stress test, my dad had a minor heart attack, and surprised cardiac surgeons at Maine Medical discovered he was in need of a quadruple bypass. As far as they could tell (due to a healthy heart, yet awful arteries) he’d only had one heart attack, which was surprising because like me, he’d been feeling crappy for several months before my mom spotted it and made him see the doctor. I’m betting boxing with Mr. Shoe on the Wii and yelling, “I’m gonna kick your ass!” probably hurt and he merely golfed and bowled to hide it (I’ll get back to this).

Fortunately, my dad never smoked, and wasn’t in horrible shape otherwise, and the doctors were sure he’d come through just fine. They were surprised at how much better he did than they’d expected.

So I’m flaring up again. I mean, I suck and it’s not my fault and it’s not necessary, but I gotta deal with it. But I felt really shitty — to the point that Mr. Shoe asked if I thought it was a good idea to go up to see my parents for Christmas. Uh, yeah. Because… I have to. Anyway, it was supposed to be icy when we were going to head back, which was a good enough excuse to duck early — but I looked and felt so shitty my mom actually agreed that it was a good idea to do so, no matter what the weather was. So believe me, I must have looked like a steaming pile with an olive.

But the light this year… Thanks to the hints my mom was completely unaware of dropping left and right and my dad’s hatred of the traditional game of Scrabble on Christmas afternoon, we got my parents a Wii (sans balance board, mostly due to cost, mom’s knee surgery, and dad’s reluctance to use it last year — but with a DDR pad and game).

I wish I’d know my parents would have this reaction. I’d have used our Flip video camera, and Nintendo would pay us millions. Cause — you know that home video (later turned into an ad for Nintendo?)…

Put about fifty, fifty two years on both kids, and imagine that the little girl is my dad (more gray, facial hair, glasses, there you go), and my mom is the little boy having the complete conniption — and that was about it. I mean, I’m sure that little boy didn’t have a hot flash or anything afterwards like my mom says she did. But it was pretty much just like that.

My dad spent Christmas boxing Mr. Shoe, and played DDR. Thanks, Maine Med.

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