It's hard to believe that we've been here long enough to have a blog title that says "week 4"! It makes me wonder if we will ever get the apartment completely settled. Every time it starts to look good, we just unpack some more boxes and there you have it...instant mess!!!
Today was another IV medication day. Instead of the Rituxan today I received IG medicine (as if I understand that :-) Apparently the protocol is to alternate the medicine to kill off my antibodies with immune system boosts on the other week. It doesn't make a lot of sense to me to "boost:" my immune system because I thought that was what was causing these antibodies...I guess not. Maybe by the time this is over I'll have a good grasp on the medicine.
After the IV session (only four and 1/2 hours this week) I went back up the the GI lab to have the ph probe stuck down my throat for 24 hours. I wasn't looking forward to it and I still feel sort of cruddy. When they told me that the test I had last week (big probe in throat to see how I swallow) had to be repeated I drew that magical line...NO WAY were they going to do that one again unless Dr. Zaas said it was mandatory. The girl was very nice about it and kept telling me she understood however she was going to stand firm on repeating the test. I called Khara who called Dr. Zaas and the short story is that I some how got out of both tests (no probes for me today!!!)
By then it was around 2:00 and I hadn't eaten so I went home instead of rehab. I was going to do some work around the house but I fell asleep and didn't wake up until 5:15 p.m. It really cuts down how productive you can be. Vanessa...that's why I need you to come out for a couple of weeks. You'll get me into shape. We could then both go up to Amy's and help here organize her new house! I'd sing Disney songs :-)
Khara is going to talk to Dr. Zaas and make sure there is nothing else that needs to be done so that they can list me...I have mixed thoughts on that..."finally!" and "so soon???"
I was thinking that being on a transplant list is sort of like being pregnant. You have to be ready to go at a moments notice. Lee and I need to finalize our "ducks in a row" to make sure there aren't a few still swimming in the pond. Can it be possible for Lee and I to be so organized that we won't forget to arrange for Missy and we keep gas in the car so we can go somewhere at 3:45 a.m on Sunday if we need to and we remember to have our cell phones charged and we remember to have them with us and and and and...it seems a little daunting when I start writing it all down. Not to worry because that's why we can out to NC. We weren't born ready but we're working on it :-)
Lee's not feeling really great and I hope I didn't give him the flu. What a group we make when Missy is the healthiest one! I'll try to give him orange juice and vitamin C!
Well tomorrow I start rehab again and it will be like starting over. Having missed this much time isn't a good thing. My miniscule muscles start wimping out as soon as I stop exercising. I wonder if they'll take it easy on me or start me where I left off...I'll let you know.
Hope all is well and I'll talk to you soon.
Lee, Wendy and Missy