I’ve been in the hospital for two months now. I read that sentence and can’t believe it! It doesn’t seem that long…I’ve been taking this day-by-day and the length snuck up on me. I was admitted in November, just before Thanksgiving because although my inflammation was high and I had been slowly losing weight, I suddenly started to lose weight more rapidly and was in a bad general state of health. It was during an outpatient blood transfusion that my doctor’s nurse practitioner told me that they recommended I get admitted. My platelets were at over one million, I was anemic enough to need a transfusion, and of course my weight was very low…82 pounds.
The hospital’s treatment has involved increasing my nutritional status with parenteral nutrition (PN) and trying to decrease the inflammation with a higher dose of prednisone. The prednisone proved to be ineffective, so we’ve been tapering me on that for awhile now. I’m currently at 12mg a day. The PN has helped more with nutrition than weight. My weight did increase, but this involved fluctuations. (See graph)
The break in the line (right of center) is when I was in the ICU with C. diff and wasn’t keeping track of anything. The big dip just before that point was when we tried taking me off the PN to see if my weight would stay stable through eating, which obviously did not work. After that dip, I began to work even harder to eat and drink more, which I’m sure helped but I couldn’t have gained that quickly without the PN.
Since “C. diff weekend,” however, I’ve steadily been taking in more calories every day (I am calorie-counting), and I’ve been steadily gaining weight – no wild fluctuations, which is new. The pounds I’ve gained since C. diff weekend are more than I had gained between entering the hospital and C. diff weekend. Part of this is from eating more, and part is from my colon finally healing. Inflammation in the colon causes the body to burn calories, and since the inflammation has decreased, some of the calories are now sticking around. Also, I’m using the bathroom less.
My reaction to all of this: Finally! My persistence and optimism is finally paying off.
So I’m calorie-counting now…that’s new to me. And it’s very effective. I set up calorie goals for every day this month. The PN gives me 2000 calories, so theoretically, I need to be able to increase my caloric intake by that same amount. I had been eating about 1400 calories by mouth so I set a goal of 3000 calories by mouth by February 1st, by which time I plan to be tapered off the PN. Fortunately, I don’t think I’ll end up needing to reach that goal since I’m starting to absorb nutrients better. I’m currently eating about 1900 calories on my own, which probably isn’t far from what I ate while healthy, so if I don’t reach 3000 calories, it shouldn’t matter as long as I continue to absorb nutrients and not burn calories through inflammation.
We’re going to begin tapering me on the PN tonight. I’ll get three-quarters of the volume, so I wonder what my weight will be tomorrow…I wouldn’t really be upset if I lost a bit, as long I stabilize my weight the next day and start gaining again. I think that the taper will go well, and once I’m off the PN, I’ll be able to leave the hospital!