My bed proved to be much more comfortable than the crap recliner I had in the tiny transplant floor room. Amanda was amped up from the double steroid doses. I guess I was amped in solidarity with her because when I finished and posted yesterday’s update, it was almost 2 am, and I wasn’t even tired.
I was up by 5:30 when they came in to get labs, though. Normally, I don’t wake up; I just go back to sleep, but I heard them talking about the rejection meds and blood draw timing, so I had to chime in. I don’t understand why we can’t get this stuff lined up. If a doctor says the 5-hour difference in changing meds doesn’t matter, then fine. When we were trained about all the medications by the transplant pharmacist, they told us not to change timing more than an hour a day. Amanda has stuck to that, and I’m not even sure she’s ever missed a dose.
The steroids make her super emotional, too. Everything from overly emotional to irritated and so on. It’s not fun; I saw that peak its head up when I talked to her about the meds after the nurse left. She was overly emotional over that, and then she was pretty adamant I get up and ready when she thought they were going to start the PLEX, but hours later, they still hadn’t started it. This is the not-so-fun part of this. I feel I’m a pretty good caretaker, but when it comes to the emotional stuff, I’m not so good at that. I’m pretty emotional with some stuff, but when dealing with it from someone else, I’m not so good at it. I’m a little too blunt and harsh with words. It’s tough on both of us, so it’s just a crap shoot all the way around. We made it through last time, and we’ll make it through this time. God is good, and He’s got this!
Yesterday, I received an email from someone I did not know titled “Urgent Prayer Request—Please Pray.” It was a chain of forwards and replies from a prayer request for us. It had gone through at least four or five people before reaching us. I’m still not sure how it got back to us or exactly where it originated. It’s incredible how wide our prayer circle is—so broad that it has many people in it that we don’t even know!
We are so blessed and have already received many answered prayers. Yesterday, I sent out a few specific requests. My wording was a little off, and it could be seen as if it had already happened, not that I was requesting prayer for that. A couple of people had already praised God for the answered prayer. I didn’t even correct them; I just praised God for what He would do.
The pathology and immunology team came by. There are so many different teams now; it is wild. Each team has an entourage with them, too; some come in the room, and some hang out in the hallway. This team had a kidney doctor following along because the PLEX machine is much like a dialysis machine. The pathology fellow was very detailed in describing how things would go. The treatments are different than I previously mentioned. It will be three days of PLEX, a day off, then the IVIG. It can be given on the same day as PLEX, just eight hours later. Then, two more PLEX treatments with days in between. The antibody level will determine the next steps after that. When they left, I was trying to figure out the days and asked Amanda. She said, “Three days, then I don’t know!”
He went over the side effects. There were a few, but the most common was a weird, funny sensation around your lips and fingers. He mentioned this would be due to low calcium. They will give her calcium to counteract that, so she needs to tell them if she gets the sensation so they can add more calcium. They replace the plasma they take out with Albumin, a protein in blood plasma. I’m sure glad there are brilliant doctors out there because I feel way in over my head.
Since we’re in the transplant ICU, almost everyone wears a mask. Many of these doctors’ first language isn’t English. The pathology fellow explaining everything was Asian, Chinese, I think; his accent was heavy. With a mask on, I was struggling to understand him, especially with medical jargon that I was unfamiliar with. Another one of the rounding floor doctors may be Spanish; his accent is Spanish for sure, but not the Mexican accent I am used to living on the border. So it was different than what we’re used to. Either way, we were both struggling to understand some of the doctors, like a little old couple. My unmasked face probably said huh!?!
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