Today was my first full day home. It is good to be home although would prefer to be feeling better. I don’t know why, but I really thought I would be much perkier when I got home. I still feel like this has kicked my butt. Part of the issue is the meds- I am currently on 3 immunosuppressants and the prednisone especially is just the pits. I am on a moderate dose now and hopefully will pretty quickly be able to titrate down to a lower dose, but it does make you feel weird. Sort of like your body is racing through time even though you are standing still. It also makes it pretty hard to concentrate and to make decisions. I have also tried to not take any pain medicine today to somewhat clear my head, although think I need to be a bit more liberal tomorrow. I had the last of the scheduled plasma exchange treatments today. My labs so far are still looking good – no evidence of recurrence of the HUS and Brutus is working well.
I have been trying to figure out how to put to best use all the wonderful offers of help for the babies and me. I think during the week, we are in pretty good shape with Vilma having primary baby duty. Over the weekends, we will probably have a few shifts – around 10:30-2 and 4-7:30 or so, where if we can get help with the babies it will give my mom a bit of a break and allow her to do things around the house etc. I know we have volunteers already – thank you Caz and Karen for collecting, and hopefully we will have a few minutes tomorrow to go through the lists and nail down some times. Thank you all for your offers. It might take a little while to get this right – so flexibility is appreciated. It will be most helpful to take the babies for a walk and keep them entertained. I am not sure I will be up for much in the way of visiting.
I go back to clinic on Thursday for labs and further evaluation. My red blood count is pretty low – they were going to transfuse me a couple of units of blood before I left but we decided to hold off. It may be a good idea at some point though to help with my energy level. Off to bed!