A lot has happened since my last post:
- I got sepsis and spent a week in the hospital. It was caused by having salmonella in my blood. 105 degree fever doesn’t feel good at all. A few antibiotics later I started feeling much better. Now I’m home but need to continue the antibiotics for six weeks to make sure the salmonella isn’t hiding out in my body somewhere.
- My eye is getting better without surgery!!! Praise the Lord!!! It’s still a bit fuzzy, but the blob of a blindspot that used to be right at the center of my left eye is gone! I was even able to drive comfortably yesterday.
- I had another shorter hospital stay after coughing up blood and then throwing up blood. This came to nothing, thankfully. Both have stopped now.
- I have started plasma exchange. This is a procedure similar to dialysis in that it uses the same catheter in my leg to pull out the blood, but instead of filtering it it pulls my plasma out and exchanges it for donor plasma. It takes just over an hour and a half. What benefit is this to me? Well, unfortunately we realized that the super expensive medicine (eculizumab) that was supposed to shut down the hemolysis (breakdown of red blood cells) that’s happening in my blood wasn’t working. The theory was that the complement system of my immune system was the one at fault for the hemolysis, and yet even when it got completely shut down by the drug, the hemolysis was still happening. Plasma exchange may take care of whatever antibodies are causing the problem. Or not. Hemolysis is what’s hurting the kidneys and needs to be shut down for them to have a chance at getting better. This is the last straw for the kidneys. If this doesn’t work… well, it’s the end of the line. God, I’m in your hands. Please heal my kidneys!
How am I doing?
After feeling terribly depressed a few weeks back, I’m doing much better now. While I was depressed I experienced a surreal lack of emotions. I would see little Marian do something cute and feel none of the emotions of warmth or joy that I used to. All I could feel was an eagerness to be finished… to have no more pain… to just die and be over with it all as quickly as possible. It didn’t help that so many of the things I used to find pleasure in were now taken away: I can’t take a bath or a shower, I can’t eat salty food or much potassium or phosphorus, I can’t do ballet or pilates for fear of kinking my femoral catheter, I can’t take care of the kids by myself… And so I started an antidepressant that seems to have helped. I now find more pleasure in doing things! It also helps that I’m not allowing myself to think about death any more. I’ve accepted that I could die any day, but it doesn’t mean I have to think about it every day. It’s too depressing. Especially when I actually believe that God is going to heal me. There is still hope.