Saturday, October 27, 2012

What I Did On My Summer Vacation

(Or: Why I've been MIA)

Apologies for going so long without posting. I thought I’d let everyone know what I’ve been up to.

At the end of September, I was feeling really sick: heart palpitations, my muscles were clenching, my face felt tingly and numb, I was slurring my words. From past experience, I was pretty sure that I had a potassium deficiency; unsurprising, as I had been throwing up pretty much everything for about a month. I went to the ER expecting to get the usual treatment: some IV fluids and medicine to stop the pain and vomiting, and a bag or two of potassium. Like I said, I’d done this a few times before.

Instead, my potassium was so low that I was immediately admitted to the hospital. I had been trying to fix it myself by drinking a lot of banana smoothies and Ensure, because I hate hospitals and I can pretty much do the same thing for a intestinal blockage at hone that they do in the hospital (basically, a liquid diet and rest, giving time for the intestine to decompress and go back to normal). However, I let my hatred of hospitals and my fear of going alone (my parents were out of town that week and I waited until they came back to go in) keep me from seeking treatment for too long, and I had put myself at a serious risk for a heart attack, among other dangers.

At the hospital, they put my on a liquid diet, as I expected. They tried to get potassium in through the IV, bur I was so dehydrated and my veins were so bad after years of medical treatments that after the second day they couldn’t get an IV--even the best nurses, the trauma specialists, the nurses from ICU who used an ultrasound machine to try and find one. They also couldn’t get me to keep any food down, even with the strongest anti-nausea medications. The doctor decided, after a week, to send me to UCSF where they had better specialists and tests that could be done. Also, I had two hernias that were causing a lot of pain and trouble, and there was talk of getting them repaired on that trip.

At UCSF, they gave me the complete workup. They also tried to get an IV in, and even their best people couldn’t get one started, so they inserted a PIC line. They started me on IV food (TPN). There, they discovered that the problem really wasn’t a hernia or an intestinal blockage, but that some of the tissue that had been used to reconstruct my digestive system after my intestinal rupture last year had become necrotic (died). It was why I couldn’t keep food down, why I wasn’t absorbing the nutrients of the food I could keep down, and probably some of the pain.

The head surgeon--a smart, capable guy with a decent bedside manner, but who unfortunately was the most arrogant person I’d ever met, and that’s saying something when you look at the number of surgeons I’ve had over the years--decided he wanted to do a pretty intense operation. He needed time to prepare and reserve an OR, though, so he sent me back to the original hospital to basically hang out and get the IV medication and bulk up on the IV food so I would be in the best shape for surgery. A week later, I would come back for the operation. That week, I was pretty nervous. This was going to be surgery number 15, so you’d think it wouldn’t be that big of a deal, but this surgery was going to be more complex and take longer, with all the assorted risks that comes with, than most of my other surgeries. Also, most of my previous surgeries were done on an emergency basis...they happened immediately after discovering a problem, and I never really had time to sit and think about the risks. There was another new risk, as well: I had 125 cm of small intestine (the average person has about 22 feet). You need 75cm to be able function normally (well, for a given value of “normal”); if they had to remove more than 50cm of intestine, I would have to be hooked up to IV food for the rest of my life (or until they developed the technology to do a transplant). Along with it just being an enormous life suck to have to be hooked up to an IV for 16 hours a day (I did that for 6 months, thank you very much, and I feel like I lost those months of my life), the long-term projections are not so good. It would significantly lower my lifespan, and even when I wasn’t hooked up to the IV machine, I would still be too tired and sick to get out of bed and go do stuff. So this was a pretty terrifying possibility, and the doctor was not giving me good odds. The surgery had to be done, though; if they didn’t take out the necrotic tissue--even if doing so would shorten my small intestine too much--not only would I not be able to eat or absorb food, I would die from the infections. So I sat in my hospital bed silently freaking for a week.

(I’m putting description of the surgery below the fold, so skip if that grosses you out.)

Back at UCSF, I went in for surgery on Oct. 5 at 7:00AM.  Unlike every other time I've been put under, I don't actually remember much between going into the OR and waking up in the recovery room.  (Actually, I don't remember anything really that first day, which is odd...usually I wake up pretty quickly in Recovery and can have conversations and remember things.  My parents said they sat with me and talked for hours, explaining what happened, but I don't remember that at all.  Probably because the surgery was so long--therefore, more anesthesia--and because they put in an epidural.)

The surgery lasted over eight hours, and there were three main parts.  First, they took out the necrotic tissue that was connecting my stomach pouch and the remainder of the stomach (they had been separated during the initial gastric bypass and then reconnected with some of my intestine after the rupture).  They combined the two two stomachs, so now I only have one, though there is still a very small opening between the gastric pouch and larger stomach so I still have to eat very slowly and chew very carefully, or food will get stuck (which hurts like hell).  Next, he pulled out all of my intestines and unrolled them, going through them piece by piece and removing any dead, diseased, or blocked tissue.  This is the part that was the most time consuming, and the most dangerous.  Luckily, he only had to remove about 25cm.  Also, the previous surgeons had been incorrect in their estimation of how much intestine I had left; it was closer to four feet than three.  It's still no where close to enough for normal functioning, but at least I can eat regular food and I won't need IV supplementation.  Finally, he repaired the two hernias, pulled the muscle together, and then put mesh on top of the muscles to keep hernias from forming in the future. 

I was in the hospital for 10 days following surgery, which is about what we expected.  Usually, transitioning from IV medication (especially when I was on it for so long, over a month) to oral meds is very difficult, but the pain team was marvelous.  I do have a lovely scar over 12 inches long that runs from just under my breasts to the top of my pelvis.  My whole torso is rather hideous looking, actually, and not likely to improve much: lots of loose skin (asymmetrical clumps of skin, really, that didn't get pulled tight enough during surgery), a huge, thick scar that will only get thicker if past experience holds, no bellybutton, and indentations from the various tubes, drains, and other equipment I've had protruding from my belly over the last several months.  I could just wear a belly shirt for Halloween to scare the kiddies; it looks worse than any Bride of Frankenstein costume.

But, I'm alive.  I was also approved for disability this month.  Now, it's certainly not a lot--I don't understand why people think it's so easy to scam a good living off the government; getting assistance is a hell of a lot of work, and even then it's only a few hundred dollars, not enough by any stretch to live on--but at least I am not entirely dependent on my folks to pay for everything.  I still have to live with them for the foreseeable future, but I get on with my family pretty well, and they don't seem to think I'm an imposition, yet.

The surgeon thinks that I'm going to be all better, that after I recover from the surgery (which will take a couple months, at least, you don't just bounce back from major abdominal surgery) I should be 100%.  I'm not holding my breath.  Like I said, the surgeon is possibly the most arrogant person I've ever met, even though I do think he's very good.  And I've heard this before.  After the last surgery, I was told that I was going to be 100%, no more problems, by the end of the year.  Then, in March, the doctors changed their tunes and told me that I was permanently disabled and I would never be able to live a normal life.  That was a huge blow, to be told that all of my goals and dreams were never going to happen, and it took me a long time to make peace with that.  Now they're telling me, whoops, we were wrong, you're actually going to be fine, trust us...and I'm not ready, yet.  I'm cautiously hopeful that this will be the last surgery I'll need, that it will improve my quality of life, but I can't start thinking that everything is going to be sunshine and roses from here out.  I'll see what happens, take life as it comes. 

Anyway, that's what's been going on.  It's nearly impossible for me to write when I'm doped up, exhausted, or in pain (or all three), so that's why I haven't been able to update for so long.  I have some stuff stored up that I want to write about (including a follow-up to the "GOP isn't Pro-Life" post), and hopefully I'll be more regular with posting in the future.  However, I am still recovering, and I'm still on some pretty heavy-duty drugs, so I can't promise anything (or make any guarantees as to the quality of the writing). 

As with everything else in my life right now, we'll see. 

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