The lapse in posts means we are stable, or at least there haven’t been any hospitalizations. Either way, things have been pretty steady for us. Amanda has been retaining fluid, but not nearly as bad as before, yet it is still slowly creeping up. The day after Amanda’s infusion, week before last, we had a clinic visit with the PA since Dr. Nair was gone. Since Amanda was still creeping up in weight, the PA swapped the mid day oral Bumex to IV. So, now all Bumex doses are IV, and she takes a hefty daily dose of another diuretic and a medicine that helps the diuretic work, which also tanks her kidneys if taken too much, twice a week. It’s a crazy diuretic regimen, which I imagine will surprise the other transplant centers for sure. A few PAs have commented that they’ve never seen anyone on so many diuretics at once.
We are maintaining, but I worry that we can’t stay ahead at home with the weight creeping up. Since we are narrowing in on the Vanderbilt trip, I asked the PA about a hospitalization to get the fluid off, but she wanted to see how the added IV dose of Bumex would work. She was worried about kidney function and wanted Amanda back for labs the following Thursday. I went to work on Wednesday between the appointment and the lab check, so we had planned for Amanda to just Uber to the hospital for labs. I got in early Thursday morning, and when I got off the train, I noticed a text from Amanda reminding me of the lab appointment (inserted a lengthy sigh from me). I got a couple of hours of sleep, then right back up. I was the Uber to take her to the hospital. Only needing labs, I just dropped her off at the front door, and she wheeled herself to the clinic. Labs came back good, and her kidneys were holding fine with the added dose.
I had been wondering about the electric bill. We kept it in the apartment’s name, and just pay a service fee to them instead of moving it to our name for such a short term. After two months, I finally received a bill for all of the utilities. The electric portion wasn’t surprising, but the water bill did surprise me. The entire complex splits the water, sewer, and gas. We don’t have gas, but I assume the boiler for the hot water is gas. All of that, not including the electricity, was about a hundred-dollar bill, a little excessive for an apartment in my opinion. Maybe I’ve just been spoiled by our small town $30 water/sewer bill back home! Our electric bill is a wash and about the same, since our bill back home, without us running the AC so much, has been lowered by about the amount we pay here. All in all, this apartment is still much cheaper and much more comfortable than the hotel we had last transplant go round, so maybe I should just keep my mouth shut!
Not long after Amanda’s lab check, I was called to head back to work. I needed to drive to the hotel to meet my engineer, then hop in an Uber and head back the direction I had just come from. First I needed gas, and traffic was bad; the map showed that the 20 miles would take an hour. After getting gas, I missed putting the gas cap on and stopped at the back of the gas station to put it on and close the fuel door. Upon getting back in, my shifter went limp, and the transmission was stuck in reverse! Of course, this happened when I was in a hurry and in the gas station parking lot. I had a good idea of the problem, so I crawled under the old Burb to inspect. The linkage had come off the transmission, so I’d be able to t lest rig it up to reach my destination. I thought all I needed was to get in the drive anyway and worry about it later. I grabbed some big zip ties out of my grip, which I use for trying rail car air hoses together, and did my best to make it hold. It worked, but in my haste to get it together and not get my long legs run over, I burned my arms on the exhaust. Bad 3rd-degree burns on my left hand and right arm. I’m a week and 3 days out and still have active open wounds from it! The joys of owning an older vehicle, but hey, at least we don’t have a payment! I was going to be late after that fiasco, so I called the engineer and told him I would just meet him at the depot, which was closer. I planned just to grab the Burb on another trip.
I didn’t get off work till 3:30 in the morning, nearly a 13-hour shift, then had a 3-hour commute back to the apartment. We were heading home for the weekend, too, so I got a short nap, got up, and were back on the road by lunchtime to make the 6-plus hour drive home. I’ve covered some ground in a day before, but Houston to San Antonio on a train, then drive from San Antonio to Houston, just to turn around and drive back through and beyond SA, a couple of hours was a pretty big day! After a couple of Starbucks stops on the way, I wasn’t ready to crash, though, and wanted to do something when we got home. On the way home, I got a few things and had some friends over for one of my specialties: goat cheese burgers.
We needed to run some errands in Del Rio and have the Yukon tires rotated on Saturday. I’m racking up about 4,000 miles a month right now. We took YJ with us to have our “staff meeting” at StarBs. We needed to work on the sound and projection system, so we went to the worship team practice a little early, got that taken care of, and stayed through the practice. We ended up staying at the church until after 9 p.m. We were up for church on Sunday and there early for worship practice again. Amanda also wanted to hop in and sing a song with the team, which was well received. We had lunch with family and friends, and then needed to return to the church. Amanda had some work to take care of, and I also needed to do a few things there. Afterwards there was a quick business meeting that we stayed for, but I had to get to the house to finish up things for my union meeting Monday morning. We haven’t gotten very good at going home to take it easy!
As I went to Del Rio for my meeting, Amanda went to San Antonio with YJ to go to the neurologist for her Botox migraine treatment. After my meeting, I stopped by the house to pack up and grab Tank. We picked Amanda up in San Antonio and hit the road back to Houston. I had to take off again since my turn would get out shortly after we got to Houston. There was no way I could have turned around and gone right back to San Antonio for work, I was pooped. We had a fast week from there. Amanda had a clinic appointment with Dr. Nair. We wanted to see him before we left for Nashville. Amanda’s weight was creeping back up, so we needed to see what he would want to adjust. He upped the medication that helped the diuretics work to three times a week insted of two.
He surprised us when he spoke of another patient who was kept at Vanderbilt for a while after their evaluation. We’re planning for a week, but not much longer than that! The PA was sweet when we left; she gave both of us a big hug. We had strict instructions to call and let them know how things went at Vanderbilt. Amanda also had to adjust her main rejection medication. It was odd that she had already increased the amount she was taking, but her level had still decreased. I suspected it might be the medicine itself and asked Amanda if she had recently changed to a new round of the medication. She had just gotten some from a different pharmacy. Different manufacturers could be different, we’d herd off issues like that but we hadn’t seen any differences in 4 years of her taking the medication.
Amanda was getting her chemo treatment early this week on Friday, since we were leaving for Nashville on Monday. I wasn’t going to be there, but we had some friends, Renee and Rhonda, coming up before we left. They could come early in the week or late, so I asked if they would come later to take Amanda to her treatment. I went to work late Wednesday night and slept in the Yukon at my favorite rest area until I was called to work Thursday morning. I showed up late Thursday night and was asleep when the girls left for the cancer center Friday morning. I had prepped my replacements with a rundown of how things would go. Making sure they knew Amanda would be pretty bad off later in the evening. Turned out she did great and only felt bad later that night after she got in bed, but not nearly as bad as before. I wasn’t called out until later that afternoon, while the girls were still gone, later than I had anticipated. I had a good trip back and was off by midnight, putting me home at 3 a.m. I was still super tired coming home, but glad I wasn’t leaving San Antonio at 3 a.m.!
I was passed out when Renee and Rhonda left, and didn’t even see them while they were there! I was glad they came up. Amanda had a good time, and it worked out well that they could take her to the treatment. Nathan and Kim were coming up to help move Ryder, their son, from the Spring area where he was staying in their travel trailer to Conroe. So, we drove up to see the family, hung out for a while, and then had dinner with them. On the drive up, about an hour and a half, we stopped and took care of some shopping we needed to do. I figured the burbs would be less busy than back in town for the weekend. I was wrong; everywhere around here is busy on the weekends! It’s just amazing how rude people are, especially with someone in a wheelchair. I told Amanda that I wanted to throat punch a couple of people in the store we had left. She said only two, that’s pretty good for you. I can get road rage with a shopping cart or a wheelchair real quick when it’s busy!
Today, we had some more errands to run and got ready to roll out to Nashville tomorrow, but only after we have an appointment with the head of the cardiothoracic transplant department at Methodist. We hope to get things lined up and ensure there aren’t any other hang-ups to be listed. After that appointment, we’ll head to north Louisiana to overnight at my aunts, then finish the drive up on Tuesday. It will be a busy week of driving and appointments. There are at least eight different appointments spread over two days, with a few Zoom appointments. I’m hoping that on the way home, we can stay a couple of nights with my aunts to have a little time to see some family and friends, but Amanda has already told me I was packing a little too much for those days. So, we will see how worn out we are on the way back.
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