Tuesday, as the team came by and the doctor said his plan was the same, my first question was about the metolazone. They only gave Amanda a small dose, like she was taking at home. I wanted to reiterate that medication tanks her kidneys. I made sure this doctor knew that. He thoughtfully explained to me that in all the studies, that with even a spike in the creatinine level and the kidneys mad, all the data showed in the long term, patients improved. He was more so speaking of getting the fluid off at the cost of the kidneys. They will take it day by day and assess the kidneys before proceeding with the medolazone, he mentioned. He presented his case so well and non-abrasively that I didn’t even argue. He is good, because I like to butt heads; as you who have followed us for a while know well. As Amanda and I spoke about it, we remembered when they kept it up with the metolazone at the cost of the kidneys, and renal had to be called in, along with stopping all diuretics for a while. It is a delicate balance, but even the renal team said the standard course of action is to get the fluid off, heart trumps kidneys. It was good that Amanda had been up and just showered when the cardiologist came in, so he could see her high rate. When he did his assessment, her heart rate was 144, he said. Amanda was impressed by his math from a quick listen. I burst her bubble when I told her he had a smart stethoscope. It stood out and was bigger; I had noticed it on his first day. I had never seen one before.
Monday, I touched base with the owner of the basement apartment. We had been busy with everything going on, and I forgot to get in touch with her. We were waiting for some things to fall into place, confirmation to get the apartment. Since we would need a place to live for a while after the transplant, I wanted to see that if we committed to a longer time, six months, and if they would consider a discount on the rent. After all, the worst they could say was no. We initially agreed on month-to-month terms. They lowered the rent by $100 a month and said we could keep it on a month-to-month basis. Everything was falling into place for this apartment so well. It seemed God was just lining things up for us, more confirmation. The owner was worried about the height of the apartment. Her dad was 6’1” tall and had mentioned that if they were to rent, they may have issues. So, she wanted me to come and take a look. I jokingly told her that we weren’t creepers, and sent her our website so she could get a feel for us! She noticed that either I was tall or Amanda was petite, she mentioned. I said both, I’m 6’6” and Amanda was 5”2.”
I ended up heading over at lunchtime to do a “fit” check! Our friend who mentioned the place had sent some pictures of the old Zillow listing; they had just bought the house in April. So, I had a good idea that I would fit. When I heard basement, the first thing I thought of was the ceiling height. I gauged the height by the doors, typically 6’8”, so I knew most was good, but still tight. I knew I wouldn’t be wearing my cowboy boots or hat. When I went out to meet the owner, Thelma, I said I wore my short shoes and no hat for the check. She was really worried when she saw me and said, ‘You are tall.’ I fit in the main areas that matter, but I needed to duck for some beams and a lowered ceiling area before entering the bedrooms. The bath will be tight, but the shower has a higher area, so I should be able to raise my arms enough to wash my hair, which is getting long again.
She was trying to sell the place to me, but I was already sold. It is in northern Brentwood, a lovely area south of Nashville. The neighborhood is filled with mature trees and rolling hills, with large lots. One of the most beautiful suburb towns I’ve been to. She spoke of how wonderful the neighbors were and how it’s a leave-your-doors-unlocked kind of area. Even moving in in April, she had already swapped keys with her next door neighbor, already in a book club, and saying she’d never move! I was sold on the size before I even looked, but it had some storage area, plenty for my box hoarding, and even had a nice shop area that the washer and dryer were in. With no deposit, pet fee, and month-to-month, it couldn’t be better, well worth a few midnight bumps on the head I see coming!
About 2:30 in the afternoon, they finally came and said the cath wasn’t going to happen, and Amanda could eat. The way the scheduling works here is that all inpatients are add-ons. There were nine inpatient caths needed, so I figured Amanda’s wouldn’t happen early on. We talked back and forth about whether I should stay or go. I wanted to stay, but Amanda encouraged me to go. It wouldn’t be the first cath I wasn’t around for. With the first transplant during covid, I would drop her off at the front door then pick her up there afterward. I would fill my time grocery shopping then, so being on a plane wasn’t a big deal. This one was different being it was an exercise cath. She always sleeps for a while afterwards, so in reality I’m not needed and there more for myself than for her. I am on food duty, once she’s awake, though. We always have ramen or pho after. So, we had ramen last night, and I got some extra and put it in the fridge for her after the procedure.
After they gave us the news, Amanda was ready for lunch. She suggested we go on a picnic outside. So, we went to the cafeteria to get sushi for her. I already scarfed down some Chipotle in the car before I came back to the room. We sat in the courtyard outside the cafeteria. It’s a thoroughfare between all the med center and university buildings, more than a courtyard. The buildings are tall, not Texas Medical Center tall, but 10-15 stories tall. Therefore, the sunlight where we were, between buildings, was scarce in the afternoon. It reminded me of Ouray in Colorado, one of our friends who lives in that area, said the town only gets four hours of direct sunlight because of how tall the mountains are around the old mining town. We love the mountains, I always say, when I have to lean down in the car to see the sky, that’s where my happy place is. I’m ready to be out of the med center mountains and to the real ones!
Amanda was hurting during dinner and needed some pain meds. The 12-hour window is not short enough, and she needs them sooner than that often. Our night nurse said 12 12-hour window was criminal. We’d talked with the team pharmacist and thought she was going to change it to 10 hours, but she hadn’t. After dinner and her pain meds kicked in, we worked on hanging pictures. Amanda had ordered a set that had twine and tiny clothespins with hearts on them. I got some small command clips, and we worked on hanging almost 30 pictures up on the closet door. Most travel pictures from after the transplant for inspiration of what we can get back to after this one. And of course, dogs, we couldn’t leave out Tank and Zoey. We also needed to outfit Amanda’s old Bumex/PICC supply car,t we’d gotten for the apartment. She needed our snacks at a more accessible level, not all crammed into a bag on a tall shelf. She also needed her crafting supplies out, too. We rigged that rolling cart out, and then I used it as a dining table, wondering why I hadn’t brought it in before!
I needed to make one last run to the car before bed. I’m already giving directions around the hospital now. Someone was looking for a way to get to the parking garage, and another on how to get to the valet. So, I was pointing the way as I often did in St. Luke’s in Houston. On my way back from checking the apartment, I tried to find a decent spot in their garage. I would leave the car there while I was gone. With free parking, it was a no-brainer to leave it and take a $20 Uber to the airport, which was cheaper than a day of parking at the Texas Medical Center.
After our evening crafting, it was time for bed. I was getting up early to get ready to head to the airport. I had an alarm set, the first one I’ve set since we were admitted, but I was up before it went off. Amanda is always up before me since they are bothering her early for labs and to get out of bed to weigh. She does have a do-not-disturb order from 10 p.m. until 5 a.m. So that keeps the care partner at bay for the 4 a.m. standing wait check for an hour at least. This morning, Amanda was sound asleep, though my rustling didn’t disturb her. So, I waited to pull the blinds and roll up the air mattress until later. I hopped in the shower and got ready when I emerged from the bathroom, she was still sound asleep. They had switched her to a different sleep medication, which seemed to be working better than the other one. I thought she called for her other one after the new one didn’t work; they said she could do that. Instead, she said the new one just took a couple of hours to hit her, letting her sleep later.
The early-rising PA who loves to come too early didn’t come by this morning. I figured she’d have been by while I was in the shower, but we never saw her. The first we saw was the cath lab nurse, who acted like the exercise part was not a big deal; still sounds crazy to me. She also said “cath for evaluation for transplant.” I wanted to say, honey, we’re already evaluated and approved (insert loud approval stamp sound)! I spoke of the neck versus groin. Amanda hasn’t had a cath via the neck. The nurse had already noticed that mentioning they’d already checked the liver biopsy notes and it seemed to be a good access point. If not, they would go through her groin and have other ways of exercise besides the bike. I did ask that the doctor call me afterwards, and she noted my name and number.
It was waiting for the team after that. The nurse came in with morning meds and noticed we got some pastel colored dry erase markers, a holder, and an eraser for the board. Amanda wanted it to look pretty in there. I also got some markers for her ins and outs chart on the bathroom door, putting Velcro dots on them to have at the ready. The nurse was happy to have them readily available to use and said she wished all rooms had them. I’m sure it’s only a matter of time before some nurse decorates her board with something pretty.
I was holding out for the team, but I needed to go. So, I got ready and waited for the nurse to leave before I gave my goodbye hugs and kisses. Even with TSA pre-check, I wanted to be there early, as it was a new airport for me. As I left, the team was standing outside the room in the hall, yet I was already past the time I needed to leave, so I just kept on trucking. My Uber driver referenced Charles, as in the basketball player with the last name Barkley. I used to get this all the time when he played, but as the crowds have gotten younger, and as I grow older, the reference isn’t as relevant as it used to be. When I sat down and he said Charles, I laid my usual, “Just a little lighter and taller” on him. As a man of a darker shade, he got a good chuckle on the lighter part!
I did arrive at the airport too early, though. The pre-check line was quick, except for the baggage scanner going down and requiring a rescan of a few travelers’ bags, including mine. I’ve flown enough to know what causes a second check of my stuff. My money clip is a multitool, so if it’s in a bag, it always gets searched. So I just leave it out in the tub next to my bag and phone. I pack light with a backpack carry-on only, so I’m pretty mobile. I hate checking bags. I hadn’t flown Southwest in over 20 years, so I was trying to remember how the boarding worked. I was in Group B, position 9, and knew without assigned seating that it mattered. I called a friend who flies with them frequently and asked for their advice. He thought I could get the preferred aisle seat. I like the left side aisle so I can stick my bad knee out. I was in a good position and got an emergency row window, which didn’t have a seat in front of it. No one was in the middle seat, so it was a perfect spot to stretch out, with my arms and long legs both. The flight was good, a little rough for a bit, not bad at all.
When I texted Amanda, “touchdown” upon landing in Austin, she said they had just come in and mentioning it would be about 15 minutes and they’d take her back. We weren’t even to San Antonio before she called and said she was out. She was surprisingly not groggy either. It didn’t take long; it wasn’t that fun, but she was feeling okay. I’m glad I didn’t stay; it seemed not to have been that bad compared to normal, and she wasn’t on bed rest since they went through her neck. It’s sad that I can’t be there, but it is imperative that I work to maintain my insurance. The two-on-two will get us by for a while. Not fun, but very doable. As Mama always said, “You can beat a bear with a stick for a little while!”