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.)