Let me start by saying that Daphne is doing great. Her kidney function is perfect. Even medication levels have been stable.
Last week’s labs showed a bump in viral activity. I was riding the train home and saw a call from the hospital just as I was heading into the tunnel of no cell service. Our favorite nephrologist left a message in a very chipper tone, saying he wanted to “go over Daphne’s labs results.” That is code for “something is not right.” It was after 5pm so we were left with having to call the answering service (appalling, unless you have an actual emergency, they will act like you are breaking the rules by calling them, even though doctors gave specific orders to call).
We’ve been playing this game for a long time, and every time there is a generic “go over results” message, I freak out. Completely. My mind goes all sorts of horrible places. I have gotten better at coaching myself to look at the child. She his happy. Eating. Peeing. Full of energy. Whatever it is, it’s not an emergency. And if it is, the doctors will keep calling until they reach us.
The next day, I finally connected with the on-call Fellow. There were some liver function numbers that were elevated. The last time this happened, she said, was when there was detectable CMV in Daphne’s blood. I would link to a description of post-transplant CMV infection, but I am not going to because I may read it again, and I don’t want to. It’s that scary. Daphne was on a prophylactic antiviral for 6 months to prevent CMV infection. She’s off now, and the CMV is back. Just to keep things fun and interesting, the CMV results were not in yet on Saturday, so when the Fellow called, she was guessing it was CMV that was making the liver numbers go awry. The next day, we got confirmation. She spoke with the Infectious Disease specialist and they confirmed that Daphne needs to be treated.
The antiviral that prevents and treats CMV infection is extremely toxic. She is on a pretty big dose, twice a day. We are making sure to give her the meds on a full stomach, but she definitely seems queasy. This is not good. But an active CMV infection is worse.
This morning I took her to clinic, and all is well. She had a 10-day cold a couple of weeks ago, and for the first time, managed not to lose any weight. She gained only 3 oz since her last appointment. The doctor did not want to repeat labs today because it is too soon for things to change dramatically, so she goes back next week. We want the CMV to go back to undetectable, and we want her white blood count not to plummet as a side effect treatment.
Is that too much to ask?