Day 9 hospital update

David, Kristina, Hatley, me and my mom a few days ago in Kristina’s room

The medication and treatment continue to work at bringing down my creatinine levels – today they are down to 5.0 from 5.5 yesterday. The doctors are very encouraged by how I’m responding and with the combination of the 3 different blood pressure medications, that is staying down as well. I’m still praying for patience, as a 3 still seems forever away. I have to accept the things I cannot change though, right? I’m hoping I’ll get to go home Monday, but we’ll see! Some great news is that today was the first day I didn’t have to get the thrombosis prevention shot in the belly, which is currently a shade of red/pink/purple that I didn’t know skin could be.

Chase stayed Thursday night and Friday afternoon, we decided to watch a movie. He picked My Sister’s Keeper, which I’d seen before, but I tend to have a bad memory when it comes to remembering movies, so I had completely forgotten that so much of the movie had to do with kidney failure! I’ve been working on trying not to cry so much, but that was next to impossible watching that movie. It’s funny – I was never much of a crier before. Chase said he has seen me cry maybe 3 or 4 times in our marriage…until the Lupus. I was talking with Paul on the phone the other day about how I hate how much I cry, and then I started crying! Poor Paul! What’s wrong with me? I blame the steroids.

I started researching a little bit last night about what life with Lupus will be like, and it made it sound like I’ll be tired, weak, have headaches, achy joints, etc, and I started to get nervous. I asked my doctors if that was how it was going to be and they said that since I will be on the immunosuppressant for 2-3 years, the lupus will be in an inactive state, so I should be able to live pretty similarly to before. Plus a weird mask much of the time. I’ve been really disappointed all week because at first, they told me I wouldn’t be able to be around kids at all (which is the whole reason I’m in Nicaragua!), but I asked again today, and Dr. Aragón said that I could still go to the services as long as I had a mask on. I was so happy I cried. (big surprise, right?)

One fun thing about my mom being here is that she got to go to the kids and youth services with Chase today. When she came in October, the kids service had been cancelled that week, so she only got to see the youth service. She brought her camera, and Chase warned her that if she took a picture of one kid, she’d be taking pictures of all of them. She took so many her camera battery died.

I’m a little nervous because life with no immune system changes so much. I never used to be an extremely clean person, as far as germs and things go. Now I need to wipe down grocery cart handles and treadmills (confession: I have never wiped off a treadmill, but I just don’t sweat that much!). I’ll need to keep wipes and hand sanitizer in my purse and make sure people aren’t sick if they come in my house or if I am going to go to theirs. My life will be need to be so much more cautious. But I guess it’s better than having my own immune system attacking me all the time! I used to be the girl who never went to the doctor, and now, as my doctors told me today, I’m stuck with them for life (or as long as we’re here anyway). But I told them I’m fine with that, because I happen to like my doctors a lot.