Stopping and Starting
Ana’s lab results from this past Tuesday came back good! Her liver enzymes went down again and Dr. Martinez cut her prednisone dose in half as of this morning. She was on 5 mg/day before she went into rejection, and she’s at 20 mg/day now. She’s experiencing all the uncomfortable side effects we learned about prednisone when she was on it back in November/December, so this is very good news. The fact that the rejection responded very quickly to prednisone is also good news, according to Dr. Martinez. The outcome tends to be better for patients who respond to prednisone and the liver will recover completely from these episodes (assuming the response is quick). Her exact words were, “the liver does not even know the rejection event happened.”
Ah livers. A piece of magic in our own bodies.
Ana may have an appointment at Columbia on Monday but since she is doing so well, they may let us skip this one and just draw labs locally (hopefully!) She’s missed so much school this year that it would be nice if she could wrap up the year with a couple of full weeks. When I said this very thing to her she responded by saying, “well, actually, I’ve been to school a lot more than I thought I would.” I love that she’s seeing the glass as half full. Now if only I could do the same..
And speaking of trying to get back into some sort of routine, this morning I rode my bike for the fifth time this spring, and marveled at how difficult it was for me to climb hills that I didn’t even notice last year. After twelve hot miles of riding, I’m exhausted and feeling discouraged. Last year I could do 18 miles in the same amount of time it took me to do this morning’s ride. I keep trying to get back into cycling, and getting derailed (ha! a little bike humor for you..) either by the weather, my own lack of momentum or post-transplant emergency issues like Ana’s recent episode of rejection or 103.5 fever.
It struck me as I climbed (exhausted) off my bike today that this whole stopping and starting thing is something I didn’t really think about before Ana’s transplant – or immediately after – when every moment was critical and I was operating in “emergency mode.”
I guess I keep thinking that we’ll just get back to our lives even though as a relatively intelligent person I realize that our lives have changed forever. I thought I could get back on my bike and ride it – as though nine months of being sedentary, eating like crap and living on caffeine never happened. It took me three years to get strong enough to ride over these hills like they didn’t exist, and now they feel like mountains to me. That’s depressing and it’s ironically similar to what’s happening with Ana’s health right now.
I had a forty minute conversation with Dr. Martinez about expectations and communication because of this very issue, actually (bless her for calling me!). It is hard for me to see Ana having a great week (like the one before her birthday), only to be in moderate rejection and hospitalized (the very next week). It is hard for me to know what’s serious and what isn’t – so what else can I do but treat everything as serious? And…it’s exhausting to live my life as if we’re about to get a call to rush Ana to the hospital at any moment. The transplant is over, but I’m still living with my phone attached to my hand and jumping every time it rings. How do you turn that fight or flight reflex off when things are still so uncertain?
As soon as I start relaxing, something goes wrong and then I’m back in “emergency mode.” This isn’t good for me, and it’s not good for Ana. It certainly isn’t good for my ability to climb the hills on Creek Locks Road. Somehow I have to break this cycle of stopping and starting, and incorporate our “new normal” into my psyche so that I can handle these hiccups calmly and recover from them more quickly. I have to learn how to expect the unexpected. Any advice on how to do that?? Somehow I think that’s tied to getting on my bike three or four times a week and just…riding. That’s the only way the hills will get easier.