This morning when Adam started a new bag of medicine, we discovered that the pump had quit working almost 25 hours before. I'm not sure why I wasn't aware of it at the time, but I went a full day without the dopamine. Did that affect me?
I felt good most of the morning yesterday. In the afternoon, Adam and I took the kids to the OC Great Park to ride on the carousel. That went well but took a lot more out of me than I was expecting it to. As the evening went on I felt increasingly fatigued and heavy and weak. This morning, Zachary woke up early but I couldn't seem to fully awaken to get up with him. Instead I spent the next few hours in and out of dreams that all had a common theme of me having a hard time keeping my eyes open. When Adam finally had me get out of bed at 9:15 so he could switch my medicine, I felt more wiped out than I have in a long time. Every time I moved at all, every one of my muscles would shake and twitch as if I were a weightlifter who had just finished an enormous number of repetitions.
Coram Infusion Services who supplies my medicine called shortly after I woke up to schedule my next delivery and I told them what happened with the pump. They will be sending a replacement by courier this afternoon.
Next I paged the on-call heart transplant cardiologist at Kaiser Santa Clara to give them an update about the pump failure and resultant fatigue. Dr. Weisshaar called me back and says it sounds like the dopamine is doing something for me after all... it's kept me from having these severe payback days. She seemed to think that now that it's restarted I may find the recovery period shorter than I would have without it. I'm feeling less shaky but still VERY tired.
Whether or not it shortens the payback period, I'm glad to know the dopamine is actually doing something for me, even if it is just keeping my condition more stable while I wait.
How much longer will I be waiting? It's impossible to predict or know for sure. The call that they have a heart for me truly could come at any time. Every time I speak with a member of my care team, they say, "Hopefully the next time I talk to you, you will already have your new heart." But on Thursday the Cedars-Sinai transplant coordinator, Jenna, told the Kaiser transplant coordinator, Lena, that she is confident that I'll have a new heart no later than the end of March. So it could be tonight, or it could be 5 weeks from now.
The end of March sounds far away now, but in the scheme of things it really isn't that much time (only 35 days or so) and will go by quickly if indeed I do have to wait that long.
I'm anxious for things to move forward, but am truly powerless. All I can do is trust God's timing and learn to be content and enjoy my present circumstances.
My title has a double meaning. The first is plain: I'm still waiting in the sense that the heart transplant has not happened yet and I have no choice but to continue to wait. The second is more of a goal than a reality: the Spirit is reminding me of the need to be still while I wait, to allow Him to still my anxious thoughts and replace them with trust and assurance and praise and surrender. Yet as it is written, "the spirit is willing but the flesh is weak." It's an ongoing struggle, and I am in need of your prayers.
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