Tests and More Tests

I woke up early, couldn’t sleep, and thought of the apartment. So, I emailed the leasing manager to ask what it would take to get it off the market. I didn’t want to lose a big deposit if we didn’t have to. Amanda and I decided we should not do anything until she was officially listed, too. I woke feeling that getting the apartment was still the right thing to do.

I guess getting breakfast and groceries is my leaving-day tradition. Amanda wanted a sausage biscuit, which was unusual for her. It’s one of my favorite meals, so I didn’t argue even though we don’t typically eat breakfast. As I got in the car, I noticed an email from the leasing manager. She said they usually only hold them with a full security deposit, a month’s rent. But she understood our situation and would take it off the market for $200 until Amanda gets listed. Things were lining up too well for this apartment, and we eventually decided to go ahead with it once Amanda is officially listed. We filled out the applications, and I sent the “hold” money in.

I grabbed Whole Foods curbside again, no time wasted, and I was barely stopped before I got my groceries. I’d pick up breakfast from Chick-fil-A. They had heart-shaped biscuits. Amanda wanted a chicken biscuit, and I went with a sausage biscuit. As I pulled into the garage, the financial counselor called to do an evaluation with me. I was driving looking for spot, mine was taken, how dare them! Most of our bills are auto drafted, so I was just guessing as I went round and round looking for a parking spot. She said, “I know this is wrong,” as she mentioned our max out of pocket was $20,000. I said take a zero off; it’s only $2,000, and we’ve already maxed it out. This may be a record for us to reach our max out of pocket so quickly. I asked if we passed with flying colors and she said you are financially cleared, and since you have met your our of pocket maximum, the transplant will be covered 100%. 

When I came back with my hands full of bags, Dennis, the security guard from Starbucks, waved at me as I waited at the crosswalk. I felt like a traitor waving with my hand full of Chick-fil-A! The doctor came in and busted us as we ate, jokingly saying, “This is why you are retaining fluid!” I told him that the one time we ate a cheat breakfast, you walked in on us! I told him that we usually get fries there without salt, and that way, they are always freshly cooked; he looked impressed! They were still going to hold everything regarding the diuretics. I also asked about the 24-hour urine collection they were doing for the transplant clearance, checking creatine levels. Her kidneys were mad with a higher creatine, so I wondered. He said they might need to repeat it later.

The transplant pharmacist came by to go over things for her evaluation; she’s the only one that looks like she’s in high school! Her clearance was easy, asking questions like how often do you miss doses, do you stop taking medicine when you feel good or take more when you feel bad, and so on. After the evaluation, she went over the new “mab” medicine. Amanda will be taking this next to try to combat the antibodies further. After that, it was time I hit the road. I got a “see you later Bark” send-off from Dennis as I walked by with my backpack on and “front pack” slung across chest. 

I met Rhonda about halfway to San Antonio. Her truck has a distinctive color and a grill guard, and I just happened to see it across the interstate! The testing was going well. Amanda saw her X-ray report, and one showed she still had a piece of a previous pacemaker lead part of her original heart. Which we thought was crazy, only recently, even knowing that part of the old heart was still there. I was cooking along pretty well till just outside San Antonio, where traffic was backed up. Highway 90 came to the rescue when I took a detour to miss the standstill traffic. Then I took the loop around San Antonio and down South to try yet another way to get home and miss the traffic. I’ll know all the ways sooner or later! I needed to take care of a few things at our Airbnb when I got to town. Namely, get coffee in there. Hopefully, the cyclist found a suitable replacement cup of joe with the $10 refund I gave him; I better get a good review!

They started Amanda on the blood-thinning heparin shot in the belly every 8 hours; she wasn’t happy. Once I was home, I was busy working on things. Some friends came over to do a meet and greet with Tank so they could come help let him out if we needed an extra hand. I was busy getting a new printer the Union got me for my reporting. After that, I was catching up on the meeting minutes for a meeting on Monday. Tank would come into the office to see me and get pets but wouldn’t stay even after I put a bed there for him. Zoey was always my secretary, sitting on my feet under the desk every time I was in there working. When I emerged from the office, I saw why Tank didn’t want to stay with me. He was in my chair, or should I say, his chair. He was very needy of pets and love when I got in bed, though curling up on my chest.

I didn’t get out to work as early as I thought I would. A couple of deadheads (van rides) fell off the lineup and pushed me to get out just this afternoon. I gladly slept in and then not so gladly got a little more union work done. Amanda’s kidneys were still not happy, and her creatinine was higher again, so the diuretic holiday continued, and a renal consult was added. They gave a small bolus of fluid to kickstart them to wake up. Even with a lot of the fluid off, her jugular vein was still distended, indicating the fluid was not the sole cause of the heart not pumping well. Things seem to be getting worse. It was a busy morning for her with them wishing her off for a neck and leg doppler early, which is like a small ultrasound, and I’m not sure of the difference. That was followed by a pulmonary function test.

I had something come our way I didn’t even pray for or even think I needed. I volunteer for Peer Support (when a train crew hits a car or injures someone, I call to check on the crew and offer support). One of our leaders for the program texted to ask if anyone could go to Houston to attend a class. I nearly broke my phone trying to call back so fast! I’ll get paid lost earnings for an entire trip to Alpine and back, plus get mileage there and back. It was such a blessing and I’ll attend the class on Wednesday. 

I was called to work a little after noon. I was going to call Amanda on my drive, but I got a text that said “Getting boobie ultrasound now.” She was getting the mammogram substitute ultrasound. She didn’t get out for a while, and I was already on the train when she did. I didn’t get to talk to her for a while. We had an almost nonstop trip; it was slow, but not as bad as my last westbound trip. Once to Alpine, I was sitting in my little car waiting for my engineer when it began to shake oddly; it felt like the wind was blowing it hard. I opened the door. There was no wind; I thought maybe the engine, but it didn’t feel like that. Once my engineer was in the car, I asked about wind and said what I felt. He said he felt something he thought might be the locomotive we had just gotten off of. We looked at each other and said Earthquake at the same time. Later, we searched and found a 4.9 earthquake 100 miles away!

Speaking of work, work is something else I have been considering that goes along with getting an apartment. I can make a seniority move to San Antonio to work from there to Houston. This would be like what I do now, except my home base would be San Antonio. In our case, I would just live in Houston both ways. I’d just need to stay on top of things and leave before getting called to work. It’s a 3 to 3 and a half drive, and I get a 2-hour call. It’s doable, and I could make that move anytime and only be tied to it for 30 days. If Amanda is admitted, it would be easy, too. That way, I’m not going back and forth in the opposite direction to West Texas. I would need to get my Suburban up to Houston to get back and forth from the hotel to our apartment, but that’s the easy part. As for the apartment living, we have more support in Brackettville than in Houston when I am at work. I would be home both ways, so Amanda wouldn’t be alone as much, though. Tank would be an issue if Amanda couldn’t let him out, too. I’m really hoping we can find a kid, or anyone for that matter, who can take care of Tank when needed. I know Amanda wants her baby with her. We have a lot otep067 consider.

I got a text with a picture of Tank from our new dog sitter this morning. She rarely sends pictures, even though I told her tips were strongly based on how many pics Amanda receives while we’re gone. If I had been told that when I was younger, I’d have sent endless dog pictures! Amanda loves getting pictures of her babies. He looked like a goofball and had badly messed up the blanket on top of the bed! 

Amanda’s kidneys were even madder this morning; her creatinine was up again. The renal doctor had been by and was okay with how the cardio was handling things. The transplant team wanted to see Amanda’s BMP to check how things looked with the fluid. If they were good, she would get some more Bumex to not get behind on the fluid retention; she was already 5 pounds up. They also wanted an X-ray to make sure the fluid wasn’t getting around her lungs. Amanda received a notification about an itemized bill for Soliris. My estimate was easy off; it cost $142,000 a dose! The shortest admission for the infusion was $169,000, with others a lot longer. That is just insane how much it costs. It’s a good thing we’ve maxed out our out of pocket already!