I think we both slept better last night; I know I did with my melatonin/benadryl cocktail. I slept well til the railroad called me to go to work around 1 am. I didn’t take that call to work, but luckily, I still had a couple of paid sick days left. Hopefully, I won’t need more than one more day because that’s all I have left. 2024 was the first year we have had paid sick days in all of my 22 years with the railroad, too.
We’ve had an issue with the main rejection med. They want to give it to her almost 4 hours early. It is time-sensitive, and we always have an issue. To get the trough level, the lowest level of meds in her system, a blood draw must be taken before the next dose, so it matters. They never get this right; everyone is usually late in the morning because when you come into the clinic, you need to have it drawn then and not 6 in the morning, so you think they would know not to change it. We have to set them straight a lot on this issue! They make sure to give you bottled water to keep from having food poisoning issues with ice, but we can’t get the rejection med timing right on the transplant floor!
We both had showers this morning in the tiny bathroom. I know that made Amanda feel a bit more human. After my shower, I was at the sink in the room, shaving in my tank top undershirt, when everyone decided to come in! Amanda had been drying her hair, so I thought we might get busted. Thankfully, it wasn’t like our paging Dr. Pyro incident before the transplant. That was when I got busted for making toast and set the fire alarm off. I had my toaster and scenty wax warmer confiscated that time. Amanda would have been up in arms if they’d taken her expensive hairdryer!
After I returned from grabbing coffee, the hospitalist was talking with Amanda. He really didn’t know much and was behind the ball about what was happening. I don’t think he understood that our cardiologist, not the rounding doctor, calls the shots.
Praise by Elevation Worship came on as I turned the Fire Stick to Amazon Music to play some music. That was one I needed to hear. Some of the lyrics are: I’ll praise in the valley Praise on the mountain I’ll praise when I’m sure Praise when I’m doubting Because my praise is a weapon It’s more than a sound Oh, my praise is the shout That brings Jericho down
So, the results that the hospitalist told us were negative weren’t actually negative. There was a crazy amount that happened all at once, as much of today has been. The nurse came in and told us oh, you’re going to the ICU then proceeded to help the PCA fix her BP machine. I chimed in and whoa, you can’t just tell us that and then go about something else. She said again that we’d be going to the Cardiothoracic Transplant ICU and what building it was in, but there was still no explanation. Then, she tried to help the PCA again. I chimed back in with a not-so-nice tone, saying NO, we need to know what’s happening. You can’t just drop that we’re going to the ICU without an explanation.
I won’t go into all the details within this post, so tune in later tonight for that. But, the biopsy results they sent out showed that she was rejected. It’s not a cut and dry this is the level kind of rejection. Likely a low level, but with the high heart rate, which is currently at 150 and so fast her head is shaking back and forth, they are going to treat it aggressively. They ordered high-dose steroids and plasmapheresis, plasma exchange. This takes close monitoring and a central line, a huge IV in the neck/chest, or groin that goes to the heart, so that is why we’ll be in the ICU.
Various teams came in to talk with us. They said we’d be in the ICU for ten days or so, one saying we might get out by Christmas, but that’s not going to happen. A lot was going through our minds: how bad the rejection, how hard on her body the treatment would be, whether I could stay with her, whether we would need a hotel or apartment, how we could afford this, and so on. It was an emotional time; I sat down on the bed with Amanda to console her, but it didn’t last long because here came a fellow from the ICU transplant team to go over things.
I’ll go over the new treatment plan in a later post tonight. Right now, she is having the central line placed. By the afternoon, it had been a crazy day, but it is still moving quickly.
Leave a Reply