Day 26--Catching Up

It's been a tough week in a lot of ways, although Torger is doing OK. Dr. Tse has been monitoring his kidney and liver function closely and adjusting his medications on a daily basis to try and prevent any problems. Apparently, every patient is different in terms of how their bodies absorb the medications, and Torger is like a little sponge...he just takes it all in. As a result, the Tacrolimus (an immunosuppressant they're using to inhibit graft vs. host disease) builds up in his system, which can cause liver and kidney failure and potentially be life-threatening. So they've been checking his blood daily and giving him a liter of saline every day to help flush the chemicals through his system. We now fully understand why we're required to live so close to the hospital during the first 100 days, since we've had to go in every day this week (except Thursday, when Torger pretty much just slept all day recovering from the strain of the day before). Wednesday was the toughest day because the nurses tried to give Torger an infusion of saline through one of the lines on his Hickman catheter, and the line burst! The nurses were pretty surprised...apparently, none of them had seen that happen before. Torger was terrified they were going to have to replace the whole catheter (which the doctors all thought would be necessary) because in his current state of immune deficiency that would be very dangerous. But fortunately, there was a handy RN who was able to repair the line with what looks like some little pieces of plastic tubing and thread. But in the meantime, Torger wasn't allowed to eat or drink for nearly 15 hours, which was really hard on his system...and by the time we got to our late-in-the-day appointment with Dr. Tse, he was just spent. We were both completely frazzled when we got home that night, and I made the mistake of checking my e-mail only to discover that my boss at the University had resigned. After a mini-meltdown, I got ahold of some friends on campus and talked to the interim president, who reassured me that I still had a job. But neither Torger nor I slept well that night.

On Monday, Dr. Tse is making arrangements so I can start giving Torger his extra fluids at home, along with his magnesium, which will make our lives easier. One thing that has been frustrating for both of us is how slowly everything moves now. Torger says that the hospital seems to just slow time down to the point that you either go insane or quit caring about time. If you're scheduled for an hourlong appointment, it can easily take five hours. And at home, Torger himself--usually Mr. Speedy--now moves really slowly, so that getting dressed, putting on his shoes, and brushing his teeth can take the better part of an hour. He hates it because he says it makes him feel so weak, and I admit I get antsy and have to stop myself from rushing him along. He just has very limited energy, and he can't push his body in ways that have always been normal to him.

So now we're here in the hotel, getting him prepped to go back to the hospital for yet another infusion in a couple of hours, after he finishes getting his infusion of magnesium here at home. On the plus side, his digestive problems seem to be clearing up, and he is showing quite a bit of level one graft vs. host disease (GVHD) in the form of a rash on his skin. It's appeared on his face, back, legs, hands, and groin, and this is what the doctors want to see. A little bit of GVHD is necessary for Torger's recovery, but too much is very bad. They took about a dime-size patch of skin off his hip on Friday to biopsy, and so far, Dr. Tse likes what he's seeing. So we're keeping our fingers crossed that everything will just go smoothly for the next few days!