On Wednesday, I was up early to make a seniority move so I could go straight to work. My direct manager was off on vacation, so another was supposed to get me marked up at 4 am. I was up then to check, but had to contact him to get it done. I got ready for work, but my train wasn’t close, so I went to chill on the couch with Tank. As I decided to get a nap in my recliner, I noticed I was first out on the board. So, I loaded up the little red wagon that some friends from church had gotten back to home from Alpine for me. I needed to stop on the way and get a few things for it to be ready for a road rig; fuel additive and some new wipers. They had free washes at a new car wash, so I wheeled in, got a wash and vacuum in the early morning hours, and then took off to San Antonio the quiet way. I was called for a train as I got close to SA. I hit the rain shortly after, the new wipers were a good choice!
I waited till later to call Amanda since she’d been tired after starting the new sleep med. It made her groggy and made her sleep the day away; she didn’t like the feeling. She said they swapped the team again. We started with post-transplant, then switched to what we thought was pre, but it was both pre and post-transplant. The new team was also a new addition, specifically pre-transplant only. They didn’t want to change anything. The new cardiologist was a lady and mentioned the exercise cath was abnormal. She did have high pressure, but results were essential inconclusive, with the pressure not high enough to qualify for a higher listing. The team swap was good according to the new team because the pre/post team we were with was busy and the new one would have more time for her.
The bad thing with swaps is the diuretic plan. I hope that after we’re there a while, they will get a solid course of treatment. The day of the cath, she only got two rounds of the Bumex bolus. I think the three were doing the trick. The bolus runs over 45 minutes and isn’t a straight push like at home. It’s also 1mg more than what she was getting at home.
Thursday, Amanda had really low BP. She thinks it’s the new sleep med, which they cut in half to see how she’d adjust. The low BP continued, and eventually she got blurry vision. The team was called, and they all showed up. All of the diuretics were held along with the half dose of the sleep med and she was even given fluids. She just felt like crap. It ended up being a good thing our Nashville heart friend was busy and couldn’t come by. I’d mentioned that it was Thursday Farmers Market day and Amanda might want to go, but she was pretty wiped. The social worker we’d had an online interview with for the evaluation also stopped by to talk with Amanda in person.
Nothing new for Amanda on Friday. After the BP issues, and holding her sleep meds altogether, she still got some sleep. They restarted the diuretics, but oral only. Amanda has already gained a little bit. She mentioned how the oral ones don’t work, and the doc said they’d readjust if needed. Good thing I wasn’t there because I’d have had a comment for that! Sooner or later, as a whole, they will realize that the oral doesn’t work. I don’t think they’ll let her get overloaded with daily rounding. I just wish they’d gotten her completely dry at first and avoided trying oral diuretics. I would have thought they’d already figured that out, though.
Amanda got a text from a friend of a friends. We have some friends from church who moved to Colorado. If you’ve followed our travels, we met up with them on one of our many Pagosa Springs trips. I journaled about it in my Mountains Everywhere post. That was when I was recently clean-shaven, and it scared me when I went back and saw those pictures! We had a picture from that trip up with Amanda room pic, and she vetoed it since she didn’t like the clean-shaven, Barkley! These friends lived in Nashville and still had close friends, mostly from their church. They reached out to see what we needed. We were pretty set, planning for the long haul, but I mentioned a couple of things. I said that if some of the ladies would visit Amanda, that would be good, and if she could get some home-cooked meals, the plant-based options were limited with the hospital food. That was Amanda’s text: someone wanted to cook a meal and visit. It’s incredible to receive help from complete strangers. It just shows we’re one big family in Christ.
I stayed in Houston longer than I’d expected. I got in about 11 last night and figured I’d be out in the morning, but the phone never rang. I needed to get a few things for my away-from-home “grip,” what railroaders call our bags. There was a movie theater close to a few places I needed, so I figured I could get the most bang for my buck. I walked in and got a ticket, and when I sat down in the theater, I didn’t have any service, so I had to leave. I needed service to get my call for work. After that, I poked around the store and got the bag, blanket, and toiletries I needed. Since I’m not staying in our apartment anymore I didn’t have anything like that. I was called about the time I was done shopping. I went to the hotel. I was planning on getting right back out, but I need to work on the house, too. So I think I’ll take my normal time off to get prepped for plumbing and drywall. It’ll be a balance to work and work on the house, but I plan to be pedal to the metal while I’m home working on the house or on the rails—no rest for the weary.
While wrapping up this post, Amanda sent me a picture of a refresher. She made her first trip to get one by herself. Since it was closed on the weekend, she said she had to get one today. StarBs will keep my girl active, at least!
