Day 21: Nobody told me there'd be days like these

That's the line from a song of John Lennon's. It pretty much sums up how I feel about this time period. It's a time that I feel I should be celebrating. But there is so much to do..there is no time to relax, no time to even really heal. It's quite complex.

I have been to the hospital 3 times already this week - and it's only Wednesday. I went on Sunday morning for 5 hours, Monday for 6 hours and yesterday for 5 hours. These are all early morning appointments, for which I have had to get up in the dark and walk slowly through the snowy cold to the train station. I usually ride my bike, but I can't do so now for 6 weeks or more.

I have gained a lot of water weight in the last week, 3 kilos to be exact. That's 6.6 pounds. And they haven't been able to figure out what it could be from. My kidney function is going well - for that I am incredibly grateful, for a myriad of reasons. But I shouldn't be retaining fluid. They gave me antibiotics to stave off an infection - now I'm on 3 separate types of antibiotics, (this is incredibly ironic, given my years of attention to things like 'healthy flora' and all things natural).

So to check the levels of steroids in my system and make sure that the anti-rejection drugs aren't too strong, they gave me a test on Monday that involves taking my blood every hour for 4 hours. I was told not to take the medications that morning.

I have very bruised veins at the moment, so they left a needle in my arm for the duration of the testing. I walked slowly outside for fresh air for a bit, unable to move my right arm. By the time the test was over, my hand had swelled a lot from the needle. I couldn't wait to have it out. I asked 'Should I take my medication now?' The response was 'But didn't they tell you?? You were supposed to take it after the first blood test this morning. Now the test is invalid. We have to do it again tomorrow.'

I was so wiped out. I got out of there, really upset that the information hadn't been given to me by the doctor or the nurse or the blood technician. And I was so tired that I ended up getting on a wrong train and ending up in Schipol Airport instead of gentle Haarlem. It took an hour and a half longer to get home.

Yesterday I did the test again. This time I insisted that I lie down during the breaks. I took a book and lots of snacks. It was a lot easier. Especially since I'd been given the correct information, how refreshing!