Pushing It

The late dialysis on Tuesday was only a liter out of a goal of two. Blood pressure seems to be an issue with getting enough fluid off. Amanda is becoming fluid overloaded, and they seem not to think it’s that much of an issue. None of the nurses are keeping up with her intake, so no one really knows how much she is retaining, and the weights they are getting are bed weights, which aren’t that accurate compared to standing weights.

Wednesday night, after the biopsy, Amanda was feeling horrible and looked pretty rough. Her BP and oxygen were both in the tank. They couldn’t go through her neck for the biopsy because of some vein stenosis, so they went through the groin. The evening PA and NP both ended up in the room trying to figure things out. Amanda’s arms were so swollen that they had a hard time finding a vein even to get blood from. Both the NP and PA were ultrasound-trained, so they got a machine and went looking for a good vein. It took them forever, but they were finally able to get blood and run a bunch of labs. Dialysis was scheduled for Wednesday as regular, but the nephrology team had pushed it to Thursday morning. The NP called and pushed them to do an urgent session late, thinking Amanda’s issues were related to the fluid retention. 

The dialysis lab came through and got her back for a session around 10 pm. They ended up pulling 2.5 liters by adding extra BP meds and albumin. When I arrived on Thursday morning, she looked better. She felt better also; it seemed the problem was the fluid and low hemoglobin, which she received a unit of blood for. She also hasn’t eaten a full meal since Sunday, since she’s been NPO for all the procedures. It was the 4th day she was NPO, waiting for an afternoon endoscopy to check her esophagus and upper stomach because of an ongoing swallowing issue. 

Most of her issues, besides the new things after the biopsy, correlate with a condition that led us to the first open heart surgery all those years ago, SVC syndrome. When they mentioned the stenosis in her neck, my heart sank. A little PTSD set in from all those issues. The upper extremity swelling, breathing issues, a hard time lying flat, hoarseness, and feeling full in the face and neck. Needless to say, I was worried when I put it all together. I grilled the cardio this morning; it was the first thing on my list. He didn’t have any answers and said he needed to look at the report. The heart looked great, the NP said; he was surprised how good the numbers looked for the new heart. We just need everything else to fall into order. The NP did come by in the afternoon to let us know the biopsy results were back, Zero R, no rejection at all! 

We are battling the nausea, which they added a new medication for, but it hasn’t started working well yet. Her nausea has worsened since she has been NPO. The less she eats, the worse it gets. The pills don’t stop though, so I’m sure that has a lot to do with it. The swallowing has only gotten worse, too. She went back about 3 in the afternoon for the scope to check things out for that. I ran to the apartment, and AT&T was coming by to hook up the fiber. Amanda was back before I left to head back to the hospital. She was hungry and wanted a burger. I laughed and said I know a place and most of those who work there; if it was a burger she wanted, I was going to Hopdoddy! She changed her mind and thought her usual was a better plan, broccoli cheddar soup. So, I grabbed some on the way in, she ate it all too, and no nausea after. 

What may have helped is that they dilated, used a balloon to expand, her esophagus. I’m assuming they found a narrowing, but we haven’t heard from anyone with the GI team; only the nurse told Amanda about the dilation. She ate more than she has in a while. The pills were even easier for her to take. I don’t think it was night and day, but it improved some for sure.

Last night, when I went home, it was around nine, and Amanda wanted to know how long it took to get there. It takes 15-20 minutes, depending on traffic, plus I have to walk to the car, which takes a bit, too. I think she was worried about me; she is not as anxious as she was, but little things still bother her. Like today, I was planning on it being shower day, the first since surgery. The NP gave us clearance, but there was some difference in instructions, so she was anxious about that. I ordered a few things to help with baths, and I was going to try again tomorrow. I’m not going to let her get out of a shower or getting into some clothes tomorrow. I’ve got to get her out of this hospital mentality; I’m cracking the whip after now! We did make three walks yesterday, so I did crack the whip a little bit already. She is pushing herself, though; she just needs a nudge to get up and go. When she does, she typically pushes pretty hard. I’ve only been hollered at nastily once so far, so I’ve got room to push a little more. 

Today she texted me early, saying they were getting her at 7:30 for dialysis. I was just about to get up and get ready, so I said I was going back to sleep! I just lazed around in bed once I woke back up. After getting ready, I headed in to grab some lunch on the way. I got tacos again from a place I’d first tried a few weeks ago. She did really well and ate most of her taco, more than she’d eaten in one sitting yet. During dialysis they were able to pull 2 liters. That was another good run, I hope they can continue to pull that much each time.

As I was coming in, PT was saying they’d swing by in the afternoon. I was hoping to get Amanda walking early so we could make a few walks again. They worked her pretty hard, but where easier than me. She walked a little farther than we had before. I followed with a chair in case, when we got to the turnaround point, they asked if she wanted to sit, and she just kept going. I’ve been walking solo with her, its just easier than waiting for help. So we don’t go with a backup chair, she knows she has to get back, and that was her same plan. She needed to stop and take a break, and the PT said, “Okay, it’s time to sit.” She kept going!

Beverly is coming over early this evening while I head out to the Titans-Vikings game with Brett and Jackson. Amanda is doing well, and I feel comfortable leaving for a bit. It will be good to get out and do something normal. I’ve never been to a pro football game, so that will be fun in itself.