Just before I crawled in bed last night, I checked Facebook, only to find a classmate from high school had died. Matt had CF too. He was 5 years post-tx. He picked up an infection two months ago and died of sepsis yesterday. I worried about telling my parents; I still worry about telling Sarah. I knew his death would be a kick in the teeth for them as much as it was for me. Less about the loss of Matt whom I hadn't seen in years, and more about a loss of hope for Sarah. But, there is hope and sadness mixed, and much to learn as well. The immediate lesson is twofold: First from his life. He was married, had two kids (1 & 3) and it sounds like he filled those five years with as much living as he could. The second, from his death. The length of anyone's life is not set, but for Cystics and transplants it is a palpable mortality. Matt's infection did him in, and one of the things that is most difficult post-tx is protecting that new life from assailants that come from every direction. Sarah is already habituating many of the safeguards that she will need to employ post-tx.
Sarah has not been pregnant with a child, but it is unmistakable that she is gestating her new life. I have told her time and time again how the ice chips, the beeping machines, the interminable waiting, her discomfort in her own body, the unbearable swelling of her legs, the constant loss of appetite because her body feels full, and the inability to cool down her body are so reminiscent of going through labor. I spent hours wringing washcloths for Sarah the same way I did for Alana.
Sarah will bring a new life into this world, but it will be her own. She will take a first breath with new lungs; new to her, but not to the world. She will have foals legs and baby steps to look forward to during recovery-- but it will be a brand new life.
Today, for Sarah, has been the same as yesterday with a tiny bit more energy and a little less lightheadedness. She sees sparkles when she looks at things, like when you are about to pass out. I told her it was just Fourth of July fireworks. Blood pressure is low, pulse high, oxygen low-- all indicators of low red blood cell count. So they checked, and sure enough she is at a 7.2 when she should be at a 9. So they gave her a blood transfusion, which is supposed to help all of these things. Tonight was rough as the anxiety is climbing up on her again. She had some issues with her port that were resolved, but she is constantly concerned about it and it just wound her up. The nurse said often additional hemoglobin can induce a deep, deep night sleep. Let's hope. Perhaps tomorrow will be better.