Saturday, June 03, 2006

When You're Autoimmune And a Superallergic You're a Bad Candidate for Surgery

So. Tenosynovitis. Surgery can fix it.

Problem is, I'm not a good surgery candidate.

Why? A crippling immune disorder, three chronic infections, and the general ill health resulting from the wars raging throughout my body for most of my life.

A powerful immune system, out of control, wreaks havoc on anyone.

It makes one auto-immune - where your own immune system attacks your own self. Rheumatoid arthritis is when it attacks your joints, or sometimes all your connective tissue - the stuff that glues your muscles onto your bones, or to each other, whatever. Or your immune system can attack your thyroid, or a million other parts.

That same out-of-control immune system attacks other perfectly harmless substances like the food you eat, or pollen you inhale or absorb through your eyes, or soap on your skin. Allergic reactions like those can result in such an extreme immune response that it kills you. You die from asthma, from other airway constriction disorders, from anaphylactic shock, from simply leaking all your plasma from your blood vessels into your body...

Such a fine and fierce protector, usually. Rushing to our defense, saving us from horrible foreign intruders! DEATH to...to ANTHRAX! it says, and fires off its shots.

But when you're autoimmune, it thinks you yourself are the foreign invader. And it tries to kill you to save you.

And when it mis-recognizes harmless substances like pollen or perfume or food, it can kill you in the process of firing its nukes against...nothing. You're just a collateral casualty.

That's me.

I'm both autoimmune, and a superallergic.

Anything at all - say, a lingering scent from a doctor's shampoo - can send me into an instant severe allergic reaction, the kind that kills. We combat this with air purification, high doses of steroids and antihistamines, and a long, long list of other methods - but all told, they're still way too little.

Here's an example that applies to surgery. My airways, including my throat, will spasm and/or swell at the drop of a hat. Also, I have *vocal cord dysfunction,* where the vocal cords twitch and close and stuff when they're not supposed to. (That's one cause of my strange voice.) Waking up from anesthesia, there's a big race on to de-intubate me, while trying to keep my airway open at the same time. Remove the tube, and It slams shut. All hell breaks loose. One way or another they get me open again.

So far.

6 comments:

Desert Cat said...

Do they have to put you under general anaesthesia for this op?

I sense, um, trepidation here, and I don't blame you a bit. Surgery is unnerving enough without an out-of-control body to boot.

Nancy said...

Desertcat brought up the question I had. Could they do a local nerve block, so you could remain (mostly) consious?

btw My Birthday is two days before yours.

Thank you for your kind words about Brain. He was a once in a lifetime dog.

k said...

Yeah, definitely some trepidation. My usual hold on the rough-and-tough isn't enough on this. I'll be dribbing out these type posts all week, looks like. Working it out.

I've been wondering about the local too. I know it's not good, and I think one reason is because of shock. When they operated on my foot in the hospital, the idiot running the show didn't call the surgeon in time. It became an emergency. They actually had to operate in my bed without a general. Quite an experience.

That time, the surgeon was very concerned because he couldn't shield me from seeing it. I said, Great, I WANT to watch. But hey, I'm not normal. Later I found out that was one reason that extremely unusual event had the whole hospital buzzing.

If he'd had to amputate, and I was watching, it could have untoward consequences.

I'll learn more about all that soon. The pre-op dept. from the hospital called on Friday, left a message. So we'll be going over all that maybe Monday or Tuesday.

Another Aries, Nancy! I'm not surprised. DC, this lady took one of the most kick-ass dragonfly photos I ever saw. With her *Nikon,* no less! (That's my baby, a beautiful old all-manual FM2.)

I could see that about Brain from your archives. What a great dog. I've got a once-in-a-lifetime cat with me now, who'll be 22 in July. So I don't know how much longer I'll get to keep him by me. I try to treasure every minute with him, and I could see you doing the same with Brain. He was such a happy dog, and his humans had everything to do with that. He had a wonderful life.

pepektheassassin said...

I'm really sorry that you're having such an awful time. Harmonyonline is also having some kind of trouble with her right hand. Her brother gave her a speech activated thing since she can't type. Seems to be working for her (and saving her hand, too.)

Hope things get better soon!

pepektheassassin said...

PS Harmony In Line is using ScanSoft Dragon Naturally Speaking 8 -- kind of expensive, but she says its fun, and is letting her post without using her hands.

k said...

You know, I've been wondering about a speech-activated thing like that for a long time. My voice problems come and go, as do my various hand problems. I'll definitely look into this. I highly doubt I can afford it just now but I'd love to follow up on it for future *wish lists*- and to tell Walter, the family geek. Thanks, very much.

I'm still working on the *awful* bit. When I read the medical posts I think, Gee, this really DOES sound awful. But somehow it rarely feels that way. It's just how my life is. It was worse at the beginning, it was a terrible loss. A series of them. But that was mostly in 1991-1992. I've had a lot of time to adjust since then.

I've been mulling over a post about that. It's possible that after the surgery I'll be able to post, but unable to do the heavy labor I love around the house. With any luck, I'll have the forced luxury of catching up on some of those half-written posts cluttering up my not-so-commodious brain!