I'm sorry the posts of late have been few and far between, and of little substance. Every time I sit down to write, the words elude me. I don't know why. In fact, as I write this, I know there is much to share, but I'm struggling, so please excuse the rough edges.
First, the PRA (panel reactive antibodies). After much prodding, we finally received a call this morning from one of Patty's cardiologists. We had hoped he would share evidence of some real progress in bringing the numbers down. Instead, we learned that the numbers have shot back up to their original levels, in spite of the added interventions. We are crushed by this news. It would seem that all of the nausea, all of the headaches and all of the fatigue appear to have been for nothing. In fact, the only outcome of all of this is that Patty will need to again increase her dose of Cytoxan, the drug that contributes most to her nausea. Early next week, doctors will powwow to determine what other options, if any, are available. This particular cardiologist offered that a transplant against positive crossmatch may ultimately be the only solution, albeit a less-than-ideal one.
Last night, we had a real scare. Patty returned from a bathroom stop in a state of near-complete breathlessness, and was fearing she would faint. When I checked her pulse, we were shocked to find that it was beating at more than twice its normal rate. We are convinced that she narrowly missed another jolt from her ICD. Her heart rate gradually returned to normal, but the experience was very unsettling. Several times over the past week, Patty has experienced unusual heart rhythms. Our hope is that this does not mean that the heart failure is making another big jump in severity.
Neil is visiting for at least part of the weekend. He is a great source of comfort for Patty, and has an uncanny ability to make me crack up when I most feel like cracking apart. Even through all this bad news, we're finding ways to laugh. Beneath the surface, though, we are starting to really wonder if a happy ending is in the cards. Patty will keep fighting, and we'll keep hoping.
I wanted to share a nice story with you. Patty and I stopped at the high school on Thursday, and we took a moment to visit with the art teachers and some of the students. When Patty entered one classroom, more than a dozen students jockeyed for position to be the next to give Patty a hug. There are so many people who care about Patty, of all ages and in so many different places. This is, of course, a great thing.
I'll write more soon...thanks for listening.