Moving Along

Sorry, this post is a little late. I was getting tired and was falling asleep typing last night. I’m at work now, so I thought I’d finish it while I had a little downtime on the train. So, this is Friday’s update. Amanda was less than pleased with the night nurse! She said that she would tell the nurse something, then she’d just walk out. The nurse would also stand outside the door while the BP machine beeped incessantly but did not come on. Maybe she couldn’t hear, but Amanda was done with her. Amanda has been in a ton of pain; she just hurts all over. I thought she moved at a snail’s pace before we got here, but she seems barely able to move now. She’s by far worse now than before the transplant, just in different ways. She is fluid-overloaded like before, but it still seems totally different.

Tank and I had another dog encounter this morning on our walk. Tank was a good boy, just staring a little too hard, maybe he had a thing for this working girl! I had to tell him to leave the long-haired lady alone since she was obviously working with her service dog vest on! He’s been good and has gotten much better since we first brought him. I hate to take him home to be alone, but we don’t need to pay for a hotel room just for a dog when I can stay with Amanda.

Our snack bag hit a critical low level this trip. With me heading home, I needed to make a snack haul. I was going to Whole Foods but then decided it was easier for Amanda to just order online via Prime for a curbside pickup so she would get what she wanted. After our coffee, I headed out to grab the groceries and breakfast. It was a cheat meal for us; Amanda wanted a sausage biscuit. That is one of my favorites, so it took little convincing for me! I checked in on the app to tell them I was on the way. I pulled up and selected my curbside slot in the app, and in about 30 seconds, I had my bag of groceries and was on my way. Whataburger was on the way, so I ordered a couple of jalapeño cheddar biscuits with sausage and some extra hashbrowns, and then I headed back to the hospital. I wasn’t even gone for more than 30 minutes or so.

I returned to the room just before Amanda’s El Paso heart friend showed up. She stayed for a while we ate and I got Amanda all set up for before I left. I was rearranging things, grabbing towels and the “good” hospital gowns and stashing them in the drawer, so Amanda had things to fall back on if no one was around. Amanda wanted to be able to sit in a chair and not in the bed. So I got the recliner all set up with blankets and a pillow for her to sit in, just like PT does when they come in for rehab after a surgery. The snack bag was all set up and restocked, and everything was where Amanda could reach it. Then, about lunchtime, I headed out to get the car all loaded up and hit the road.

The hospital was considerably light for Go Red Day; I only saw a few in red. I was the only man sporting a red get-up! I got all the bags loaded in the wheelchair, even Tank’s bag, and made a run to the car. Only Tank and his leash were left. I had Amanda’s leftover coffee, which I brought back, so I stopped by Starbucks for my afternoon setup, ice, and cold foam. A barista with a very British accent, calling me love, was perplexed about my order. I told her what the deal was, and she said it was brilliant and romantic! Not sure about romantic, but she asked how Amanda was. I quickly told her the story, and she said “Well, we just need to get her a heart that is happy!”

When I returned to my floor in the hotel, I could hear Tank barking loudly from a ways off. Poor fella thought I left him since I took his bag. He was overjoyed when I got his leash out; he knew we were loading up for a ride then. We got loaded up with a large amount of iced caffeine and hit the road. I had a couple of tickets close together a few months ago. It had been years since I’d received a ticket. Actually, my last was when I was coming back home right before Amanda’s transplant. I’ve been stopped more in her Yukon than I have been in years. The cruise control will get a few miles over, so when I push the limit, it’s gotten me in trouble. Since I used defensive driving for the first one and couldn’t do the same for the second one I got while we were on vacation. So, I was on a deferred adjudication and had to make it 90 days without a ticket. Those 90 days were up yesterday, so Tank and I were westbound and down!

Before I was even to Katy, Amanda called to say the inpatient coordinator came by. In a somber tone, she said Dr. Nair wanted her to begin the workup for being listed again. Amanda said the coordinator with almost teary eyes she sat down to talk with her a while about things. The first big hurdle was insurance approval. Then we go through all the meetings with everyone from the pharmacy to the social worker and so on. It is a big deal; I will also need to be interviewed. Not to brag, but I think I’ll ace that interview. I’ve already been advocating for Amanda with the social worker on this trip about the wheelchair, and I called her about housing options the other day, too.

I was on the phone for a while on the way home. I made about four 30-minute phone calls to my aunt and a few friends, and I was back and forth talking to Amanda, too. The traffic was horrible in San Antonio, so I went south around the worst of it. The coffee was my diuretic, and I was about to pop when I started South. I’d been stuck in traffic for a while and barely made it to a Chick-fil-A bathroom once I exited the interstate!

Amanda’s El Paso friend came to hang out with her and brought dinner. The NP had said they would round around two, but Amanda still hadn’t seen them by dinner time. She saw that the doctor had put some notes on her chart. They also gave her a big push of Bumex in addition to the drip. That got things moving with the fluid. She said she was still in pain, but not as bad. The fluid is coming off slowly but surely.  Amanda sent me a screenshot from her myChart notes that said Heart Transplant Referral Entered. Well, things just got real!

Once home, I had to do a few things: go through the mail, get packed for work, run a load of clothes, and what not. I dried the clothes for our regular time, and they were still soaking wet. It seemed as though our dryer had taken a dive. I ordered some parts, so I’ll have a project on my hands when I return. I may call in reinforcements to work on that while we’re gone; I’ve been instructed that I need to ask for help from a few people!

Amanda said that the doctor from last night came by late, after ten o’clock. I like the late-night visits. He’s by himself without the team. It seems more personable and less annoying without an NP trying to run the show. He said it was a perfusion issue, and they needed to remove the fluid. Amanda’s kidneys are mad again. So, they may try the new medication to help the heat pump more efficiently tomorrow, he mentioned. Amanda seems to think they’ll start the new medication tomorrow.