The transplant nurse practitioner came by this morning; we don’t like this one. We have a favorite transplant NP, but we haven’t seen her yet. Amanda had already told the nurse she wasn’t taking the new medication because of the side effects. Amanda told the NP how she was in pain and had the hard, deep feeling palpitations, and she laughed. I think she is just awkward and didn’t know what to say, but laughing wasn’t the right thing. She wanted Amanda to keep taking it but cut the dose in half. Amanda complied, but I thought we should have waited for the cardiologist.
Her kidney function was down slightly also. The NP said she needed to drink more. The lower function was due to her not drinking a regular amount on the day of the biopsy. Amanda was quick to put in her order with her personal delivery boy, yours truly, to get an afternoon StarBs refresher. This site isn’t monetized, but we should at least be able to get a sponsorship with them! There have been many supporting Amanda’s hospital habit, though. Random Starbucks gift cards have appeared in my email or text from many of you.
We didn’t get our Bible Recap done yesterday, so we did a couple of days of reading and recap videos to get caught up. The palpations started again not long after she took the lower dose of the medication. Amanda describes them as a deep, hard-pounding palpation. She was shaking, her whole body, with each beat, 130 of them a minute. And only her scalp was itchy, a side effect she had yesterday. I wish she weren’t so sensitive to the medication. Her heart is just sensitive, literally and emotionally, too!
By the time the transplant team rounded, Amanda was writhing in pain. The good thing about that was they saw her in pain and felt the fast heart rate. The cardiologist quickly said to quit taking it. This cardiologist is the one we like the most after ours. He is the little person and leans or frequently sits down while talking to us. He’s even hopped up on the bed with Amanda a time or two! I like the time he takes with us. Before he leaves, he always double-checks with us both to see if we have any more questions.
We finally finished getting all our Christmas cards addressed and stuffed. I’ll have to find the mail room tomorrow. After that, Amanda was busy working for a bit. She was prepping for the Wednesday kids program and worked on several different things. Being in a hospital bed isn’t going to stop her from getting work done.
I went off to grab lunch. Amanda wanted a wrap from Chick-fil-A. I made the long, up, over, and around way to the Children’s Hospital food court. You only ordered from a kiosk; they didn’t have wraps or the salad Amanda wanted. Three weeks here, and we still haven’t been able to order from there. Amanda said they have crappy hours and a crappy menu! Salta was the next choice, so I took the other journey up and over the road, down, and backtracked to make it to the road to walk up to Salata. I could be a medical center tour guide!
We went for a walk in the afternoon. She made three laps, the most so far, but was in pain by the end. The nurse saw us entering the room and asked if she was ok. I quickly said she’d need pain meds. Amanda and I were talking about how when her rate gets about 15-20 beats over her baseline, she has issues. Amanda mentioned that maybe it was because her output during the increased activity wasn’t enough. That would be the ejection fraction, which has lowered since we’ve been here.
We had a church meeting that we needed to attend this evening. Obviously, we couldn’t make it, so someone FaceTimed us. Being a part of it and seeing familiar faces was good. The meeting was long, so we didn’t get dinner till late. I picked dinner up from the driver, and we ate, all while still on the call!
A friend in the meeting called, and we talked for a while afterward. She has been getting our mail for us. She said, “I got your mail today, and Amanda was called for jury duty, but I took care of it.” It’s nice living in a small town; she’d already called the clerk and told him what was happening with Amanda. He said not to worry about it.
Amanda’s pain got up again later in the evening. I thought we’d make the evening without needing the pain medication. It just makes me wonder what it is going to look like for us to get out of here if we don’t address the rate and subsequent pain. The fluid retention would be a question for going home, too. Before the transplant, she would get fluid overloaded, and we would have our primary call orders into the hospital. Amanda would go in and get an IV dose of diuretic, then proceed to pee upwards of 15-20 pounds of fluid off. That may be in our future if we get out of here.
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