Tuesday April 17th

Today was one of those wild days where all the time flew by... I had to go get my blood drawn to check on the cyclosporin levels as well as checking the levels on my kidney functions. Before we could even leave the house, the phone rang about 300 times. Then we had to get Kate to school and then Tom to sleep in the car so I could go to my GP appointment while Mom and Dad drove around keeping Thomas asleep. And then off to Katherine's parent-teacher conference that the teachers were kind enough to re-schedule because I was in the hospital last week and missed the previously rescheduled appointment. Then drop the kids and folks off at home and off to CVS to my wonderful pharmacist to get some more awesome steroids and a blood pressure cuff. It was a whirlwind day.

Of course I get home and the cuff doesn't' work... as if my blood pressure isn't high enough. I need a blood pressure cuff that doesn't work. Ha. It is actually kind of funny when you think about it. Thankfully, the kiddos were in pretty good moods, so they took a big jacuzzi tub with me and then happily trotted off to bed.

I am still processing the appointment. It was very rushed, because there was a mix-up and the wrong Claire was taken in before I was- what are the chances that there are 2 claires waiting for appointments back to back, and I am in the bathroom when they call the first one (which should have been me). I had about 20 minutes to meet my doctor. The poor woman has been following my case for almost 2 years and has yet to meet me. I have tried at least 4 times to make it in to see her, but with all the specialists, etc. I have never made it in. She was very understanding about it. It is just that when I am really bad, I am dealing with Doctors all the time- and then when I am not, I just can't fathom calling a doc for a regular checkup.

The long and short of it is that my blood pressure is still going up, so I am going in for an EKG and I am to monitor my blood pressure 3 times a day. I will probably end up going on some kind of med for it. The hope is that the pressure is rising from the steroids and/or the IVIg not from the cyclosporin. I am also going in for a DEXA scan to check my bones for osteoporosis from the pretencion. We really had almost no time to talk, so I will be going back in to chat further with her. The plan was for me to head in on Thursday for the EKG, but I have been taking a quick turn for the worse, so I will be headed to Boston on Thursday for a plasma exchange instead.
So Friday will be the EKG.