Survival Mode

Hello, everyone! I know it’s been a minute, but remember, no news is good news. Well, I guess if we had news of a kidney, that would be good, but you get the gist! I’m back in Tennessee to be with Amanda for a heart biopsy. So, I have a little time to let yall know what’s going on. Let me catch you up a bit first.

I had really wanted to come up for Easter, but it didn’t work out. The cost of Tank’s vet bills was a hindrance to me from getting a flight up. Then, Amanda got word after a lowering of her steroids that they wanted a biopsy. So, that crushed the Easter trip for good. I’d hoped they’d schedule the latter in April, so I’d have a chance to make as many trips as I could with work. It panned out well, and I got a good three-week run before coming up. I flew in yesterday, and today was cath day.

Easter weekend ended up being busy for Amanda and I both. Although I think Amanda’s was busier than mine, I worked the weekend and got back Sunday afternoon. There was a Good Friday service at church, and once Amanda went solo, everyone realized she would be alone for Easter, and some invites rolled in. After that service, she went to lunch with a couple of older ladies who usually sit in front of us. Saturday morning, she went to help with the egg hunt at church. She was 20 minutes late, and everyone was already gone! It wasn’t quite like our church Easter egg event, a pretty neat glow-in-the-dark egg hunt, that Amanda usually heads up, which has quite a bit going on for much longer than 20 minutes! This one seemed to be an Easter egg hunt, and that was it. For lunch, she had an invite and went out with a church couple that we’d had lunch with before.

Easter Day, Amanda already had an invite from our new friends, Tim and Becca, the interim pastor couple we had Christmas brunch with. She got a couple more invites, but decided she’d be a little more comfortable with Tim and Becca. Sunday night, Bev, our Tennessee heart friend, her husband Sam, and one of their daughters came over to see Amanda for a bit, too. There was no need to ask where Bev sat; when I asked, Amanda said she took her usual spot on the floor with Tank! She loves her some Tank hugs. To cap the weekend, Amanda had lunch with a friend from our Sunday school class, Tara, aka our sourdough dealer! She regularly brings us fresh sourdough loaves to class, still warm from the oven. We really have been blessed with the friends we’ve made here in Nashville. 

The week after Easter, Amanda had to get some labs. Her CMV levels came back elevated, and they wanted to recheck them. CMV is a common virus that affects over 50% of people after the age of 40. It usually goes undetected, but for someone immunocompromised, like Amanda, it can be an issue, so they want to keep a close eye on it. She likely got it from her transplanted heart, and her level of detection has gone up and down since the transplant. This is a virus that once you have it, you never get rid of it. Thankfully, her level dropped back down to “Not detected,” which is where we like it. It’s nice when she does need labs; she can just drive down the block to have them done. All of the Walgreens around Nashville partner with Vanderbilt. She can have labs drawn from a walk-in clinic there instead of driving to the hospital. In middle Tennessee, Vanderbilt rules the hospital market, even in the walk-in market.

For me, I’ve been busy with work, so much so that the remodel hasn’t gotten anywhere. That seems to be the story for us with getting our house done! Right now, with the added expense of my going back and forth and the loss of income while I’m gone, I have to make hay while the sun shines. It’s ironic now, while I’m gone, Amanda’s schedule has eased up, and she has a good bit of time off. We were so busy while I was here that we really never had time to do anything. Now, while we are living separately, she has all the time in the world. It’s kind of like our house remodel, we either have money to fix it and no time for me to work on it, or we have no money and all the time for me to work on it; they never seem to coincide, though!

One issue that we had last week was a high white count. Amanda has been neutropenic, with low white cell and neutrophil counts. So, you’d think a climb in that area would be good. That is, unless the jump is drastic, which had almost doubled. This is a sign of infection. Amanda and I did our own differential over the phone, thinking of what it could be. She didn’t have a fever, and nothing was red or swollen. Her knee, thank the Lord, wasn’t hot or red. There seemed to be no big infection anywhere. I thought about a UTI; Amanda has had them before without symptoms.

We had to wait till the next day to see what the coordinator would say. Mind you, no one told us anything; this was just off of us looking at Amanda’s labs, but we do have a little experience! The coordinator mentioned a UTI and asked Amanda to give a urine sample for testing. I was proud that my differential idea was one of the table, so I was patting myself on the back! The sample came back clear, so we were all back to square one, with instructions to get another blood draw later the following week. So, we’d have to wait, with orders to call if any symptoms popped up.

This living apart has been rough for both of us. We have a great network of friends and church family that we could call on at any time in Nashville. We have been blessed with that here, but Amanda is still all alone, away from home and from tons of friends and me. For me, I am staying in our house, but not in our home, if that makes sense. The big house is empty and lonely. I’m either there or at a hotel away from home at work. This last stint back in Texas, I was only out for one day when I attended a men’s Bible study. Other than that, I haven’t even left the house during my time in between trips. I’m lonely, but at the same time, I don’t want to be around anyone but Amanda, who’s a thousand miles away. We’ve fought a lot of battles, but always together, never apart like this. I won’t speak for Amanda, but I know this is tough for her. I battled Covid while I was borrowed out in Iowa. Trapped in a hotel room with no one to help me with anything, it was a terrible feeling, and that only lasted a few days to a week. I can’t imagine how Amanda is feeling. 

The other day, someone close to me who’s having their own issues said they were in survival mode when they were speaking of wanting to get some things done. I felt that deep in my soul. That’s exactly where we’re at. It’s as if everything we are doing is just to survive this trial. This is the toughest season of our lives, and that’s saying a lot with what we’ve been through. I’m a forward thinker, a dreamer; my mind is always on the horizon. Either a trip we have planned, working on future projects, or something ministry-wise. Yet, when in survival mode, it’s hard to look at the horizon when you have so much to climb through to get that view. 

To boot, God really pressed on me hard late last year—a full-on assault, one that I put up some heavy resistance to. The more I struggled, the more God would confirm through scripture and Holy Spirit promptings. I wrestled with God hard on this one. I don’t want to speak on exactly what this is, just yet; I’ve only confided in a few about it. Let’s just say it’s an obedience-without-understanding situation that is very horizon-oriented. God has the best timing, but sometimes it seems like the worst to us! Hence, my wrestling with him about this heavily. This survival mode is a desert for us, no doubt. One thing about the desert is that God loves to meet His people there, maybe it’s because we’re more receptive in the heat of it.

Amanda is so ready for her kidneys to either straighten up or for a new one to become available soon. Though home dialysis is much more flexible and easier, it is a lot. She said the other day that she was ready for all of this to be over. She is fed up with it all: the dialysis, the being solo, just the whole package. To think we’ve been in this battle for well over a year and a half, now. I heard a quote that stuck with me on my drive to the airport yesterday: “Sometimes, God delivers you from the fiery furnace, and other times, He just makes you fireproof and lets it burn on.” 

Boy, did that stick with me. I knew it, we’ve lived it, hell, we’re living it now. The quote was from a still fiery 84-year-old bishop. I looked up the sermon. The preacher continued, “Because He knows you’re going to learn something out of this pain that it’s going to produce power.” He explained that he had already prepped another sermon and wanted to preach something different, but the Holy Spirit had other plans and kept nudging him on the power of pain. He said, “They’ve got to get a new attitude toward what pain can do. It is not authorized to destroy them. It is authorized to make them.” He added, “God is more concerned with our development than He is with our comfort.” That’ll preach! And I’ve got the notes, the illustration, the application, and all ready to go! Sometimes I feel our lives are that very sermon, no words needed.

We know, and we have the testimony, of what God can do through pain. As this preacher said, God is more concerned about our development than our comfort. I can’t tell you how much development we’ve had throughout all our trials. Our deepest convictions have come out of our most painful times. God has used your trials for good, and I don’t have to dig too deep to know that God will do it again. Though I was a little down before coming up to Tennessee, my spirits were lifted on my way to the airport and even more so with that quote in my pocket. 

My flight was a rough one as we climbed out of the unusually cool for this time of year storm that extended my entire 3-hour drive to the airport. The young lady next to me in the middle seat quickly grabbed the armrest as we hit a pocket of air that dropped us. Later on, once at cruising altitude, I thought we’d hit more turbulence. Not so much, it was just when I fell asleep with my head bobbing down quickly, what Amanda and I call “whoop lash!” It was even a little rough coming down into the clear and much warmer Tennessee air.

Amanda had her eye on a clothes consignment thrift place that moves around, which we’d been to in Franklin. They had a pop-up in a town north of Nashville, so after we grabbed a snack and dropped my bag off, and I said hi to Tank, we headed out to see what we could find. The men’s section didn’t have much, but I did find a couple of shirts. It was getting a little crowded, and I got cut off one too many times, so instead of getting angry, I just went to the car and waited for Amanda to come out with her haul, which was smaller than I had anticipated! She happily told me of a few expensive name-brand pieces, quoting their retail prices, then what she’d just paid for them!

We typically aren’t out in the evening, so Amanda wanted to go out when we were. She’d mentioned the Gulch, it’s close to downtown, but not the crazy touristy area of Broadway Street, nor does it have the honky tonk vibe of Broadway. I’d picked a tapas place, but ended up being a bit busy, even on a Tuesday night, but that’s just Nashville. So, we went to another tapas spot a little further out and got a seat, but barely; it was bustling, too. We had some charcuterie and cheese to start, and after I told the waitress our tapas order, she seemed impressed, looking at Amanda and saying, “He did good!” 

We were up early with 4 am alarms, and I begrudgingly got up after too many snoozes. All of us were dragging, and we rolled into the hospital a little late, not that it matters; they didn’t even call Amanda back for her cath until about an hour and a half after our scheduled arrival time. The doctor performing the cath was the one Amanda had seen before. We saw a familiar face on the way in, an NP we’d seen many times in the step-down unit. I also saw a cath lab nurse, whom they call the old man, on my way to the pharmacy to pick up a prescription for Amanda after they took her back for the biopsy. I didn’t want to wait for the StarBs line in the cafeteria, so I went to the coffee shop I’d frequented while we were inpatient. The barista duo I knew well was there. They were glad to see me but hesitant, asking if we were just here for a check-up. Both were worried that Amanda had been admitted. They were sweet and seemed genuinely glad to see me and get a report, one saying thanks for coming to check on us.

I had to wait a bit to get the script, and the coffee shop is on the opposite side of the hospital, but it was still only gone 30 minutes. Even that quickly, Amanda still beat me back to the room. The doc came by and popped his head in to say things went well, as Amanda was sleeping. I questioned the pressures in the heart. He said they were actually really good and seemed happy to tell me so. 

Closer to the end of the 2-hour bed rest, a transplant NP came by. Amanda was zonked; she takes a Valium before caths because of her breathing issues while lying flat, and she gets extra sedation since she has such a high tolerance. All of this doesn’t do so well at first, but catches up to her quickly afterward, mostly knocking her out. She was our cold; the NP couldn’t even wake her up, shaking her. As she looked at the monitor cautiously, I calmed her down, saying that Amanda likes this, usually with delayed sedation effects.

I had already checked Amanda’s labs before the NP came in, but I had to address other issues when she told me about the doctor’s plan. Amanda is on her main anti-rejection drug and steroids as a second agent. With her first transplant, she was off the steroids quickly and put on an anti-proliferative, a fancy term for the extra immunosuppressant, as a second agent. This was the standard course of treatment for her first transplant. Since this transplant, they’ve tried to go down on the steroids to no avail. Both times they’ve gone down on steroids to much, she’s rejected. 

This biopsy was performed because the steroid dose was lowered. If the biopsy results are good, the NP said, the doctor wants to lower it again. I was quick to jump and ask about adding the anti-proliferative back. Even with Amanda out of it, I told the NP we weren’t on board with a lowering of the steroid and not adding anything else. The lower level of steroid could work, and hopefully it does, but if it doesn’t, we know the results: rejection. I was not ok with that, while she is listed for a kidney. If she were to go into rejection, they would take her off the kidney transplant list until things resolved.

Also, once she gets the kidney, they will up her steroids anyway. So, in no way did I think that was a good call. The heart team is thinking only in terms of the heart; they aren’t looking at the bigger picture. The NP understood my point and said she was fine maintaining the current level of steroids. I told her I’d confer with Amanda when she was more awake, but I was sure she’d agree with me. We don’t want anything to hinder getting a kidney right now.

As far as Amanda’s labs, her white count had leveled out. The high levels seemed to be just a one-off, and they weren’t worried about an infection. However, her kidney function was up and not in a good way. No surprise there, she is set to get a new one! She finally woke up a bit to go over her meds. The NP was thorough and stayed to make sure we didn’t have any other questions. Though I’m pretty sure I had more for her than most!

We were out before lunch, and Amanda wanted her usual snack. A StarBs refresher and fries, Chick-fil-A waffle fries to be exact! After picking that up, we went to the apartment. It didn’t take long before Amanda was in her jammies and passed out, both she and Tank. I was working this post, nodding off, and finally gave in to napping for a few hours myself. We all 3 woke up hungry, so I fed Tank and then went and grabbed some Chinese beef noodle soup. As I was getting ready to go get dinner, Amanda said she thought her nap, a near-8-hour one, was a new record!

I head back after the weekend, but we will have company. JJ, Amanda’s brother, and his wife, Lauren, will be coming up for a conference. They will be staying with us for a couple of nights. We don’t have much planned. I did get a couple of appointments for myself to take care of a few things. As early as Amanda’s biopsy was this morning, we’d have likely heard if there was rejection. So, I’m praying that is the case, and we are all clear.