Last time I left you, I was about to hop on a plane to San Antonio to take a return-to-work exam. Well, I’m already back in Texas again. So, back to where I left you. I got to San Antonio, fine, crashed for a short time in a hotel, then went to the depot. I took the 100-question test, finished in less than an hour, and only missed a few. The first thing I did was check for an earlier flight. There was one at noon, and I was about 45 minutes from the airport for the drop-off of my car at the depot. I was hustling to get over there, but for some reason, the app wasn’t cooperating. I was encroaching on the hour from departure time, and I knew that was the limit to book on the phone for my expedited flight back when Amanda got the call. I decided to just call it, stick with my late afternoon flight, and have some Mexican for lunch.
Amanda had some good news while I was gone. Adrienne, our coordinator, called and said the echo and labs looked good from our follow-up, and she could go down on the steroid. That meant she could stop the nasty swish and swallow medication as a prophylaxis for thrush. I got the word from Amanda with a picture of that medication in the trash can!
We were up early the day after I got back from my literal flying trip back to Texas. I was gone from the apartment for less than 24 hours. Amanda moved her dialysis appointment to early in the morning, a too early: 6 am “chair time.” We moved it because I wanted us to do something for her heartiversary that day. We came to Tennessee for our first heartiversary, so I wasn’t going to miss us celebrating 5 years since her first heart transplant. I didn’t plan out our trip in my typical fashion. I winged this one. I knew where we were going, but didn’t research much.
I called a couple of state parks to inquire about the accessibility of some waterfalls and picked two for us to visit. The first was the very first waterfall we hiked to on our first heartiversary trip here. They had upgraded the overlook with a very accessible concrete handicap-accessible walking path, parking, and a dedicated road. It was so nice to visit it again, with Amanda able to wheel her walker up to it easily. They even had off-road wheelchairs you could check out to go on some trails. We went to another waterfall, but the walk to it was challenging for Amanda because the older walkway had large expansion joints she had to lift her walker over, and it was uphill all the way. I should have walked to check the falls out first; they were dismal and not worth the walk, especially for Amanda, who couldn’t see over the tall guardrail anyway! She was pretty worn out afterward. We made our way back to the apartment via a different way and grabbed dinner on the outskirts of Nashville.
It seemed we’d made a full circle since our first heartiversary. This celebration had a different feel, though, since Amanda had a different heart now. She said it best in a Facebook post: “Today was a day of mixed emotions – the day we celebrate my Heartiversary. It would’ve been my fifth year with my first heart transplant, but instead of a big celebration, it felt more like a day of remembrance. Remembering my first donor and her family, and being so grateful that I was given a second chance at life, and now a third. I had to fight for this one in ways that I could never fathom, but I know that God has a purpose in it all. He brought us to Nashville, over 1,000 miles away from our home and has opened door after door for us to be able to get through this. I will forever remember my first donor on this day, and everyday, and we will continue to celebrate the gift of life I have received not once, but twice! What a blessing! So today, we ‘Raise a Hallelujah’!”
Thank goodness we had a do-nothing day after the waterfall road trip. The only thing on the agenda was the beginning of the workup for a kidney transplant, a phone call with the social worker. It wasn’t nearly as in-depth as the heart social workup. The financial assessment was included, too. At St Luke’s in Houston, I had to go through a full budget with them. Here, they just asked how much money we had saved up. We found that we weren’t required to stay close by afterwards, as with the heart. It just isn’t as much of a life-changing event as a heart transplant. The surgery is quick, and you are only in the hospital for a few days. They said the average wait time for a kidney was 5 years. I quickly mentioned we’d qualify for the safety net program. That’s where, if you are listed for a kidney within 365 days of a heart transplant, you go to the top of the list for the kidney. She mentioned that it would drastically improve the wait time. We ordered delivery for dinner; I had no intention of cooking or leaving the apartment on our do-nothing day. This was our first meal we’d even had delivered to the apartment, I’d been cooking everything, and we hadn’t eaten out much.
There were many Facebook reminders from years past about our heartiversary trips —from Tennessee to Wyoming, Utah, and last year in South Dakota. I guess last year’s post hit me the hardest. I can’t believe it’s only been a year. It seems like it’s been five years since then. I’m sure I’ve aged more than that! South Dakota is where we got news that Amanda was in rejection and we’d need to come to the hospital as soon as we got back. Though the memories are bittersweet, they’re also inspirational. That first trip to Tennessee on our first heartiversary was amazing. I can’t even begin to describe it. That feeling that we’ve made it —the one-year mark was a significant achievement; it will be even more so with this transplant, with all we’ve gone through. I long for that feeling again —the feeling of accomplishment, the feeling that we made it and beat this. Yet with all that is going on, it seems so far away right now.
We met a few couples at the young adults’ church kickoff party. One particular couple invited us to go have “the best BBQ nachos.” It was a drive, and they wanted to take their dogs to a large dog park there. We didn’t take Tank, though he was feeling much better; he was still on his course of antibiotics, so we figured it was best to leave him at home. We went to the BBQ joint, then took our food to the dog park to eat. The nachos were dismal. When they asked what we thought, I just chalked it up to, well, it’s not Texas BBQ. I didn’t have the heart to tell them that the “best” was a relative term! It was good to get out with others, though. I’m glad we’re still making connections and friends.
The plaque with wings and “Because of an organ donor” was at home. We affectionately call it “Her” in honor of Amanda, our first donor. I knew we’d need it for the heartiversary, so I had my mother-in-law ship it to us. We made that plaque in Tennessee on that first heartiversary, grabbing pieces for it along the way. At home, it is on an easel, but in the apartment, we didn’t have room for it on a table. So, we decided to make a “heart” wall. On our way back from the outing with new friends, we stopped by Hobby Lobby to get a few things to make a collage of things with Her at the center. We perused a few things, getting a good bit with the intentions of returning some. We made a Home Goods stop to pick up a few final things for the wall, then took a short break before an evening out. We were going to a 24-hour play of Grease at Brentwood high school. Bev’s daughter was in it, playing Patty Simcox, and she did a fabulous, over-the-top job as it should have been. The 24-hour play meant the cast and crew had only 24 hours to cover everything from rehearsals to wardrobe to props. They did a great job and we had a good time watching it.
The following day was church. Amanda had been to Sunday school the week before and was ready to go back. When it was prayer request time, I mentioned I’d be gone for five weeks and asked for prayers for Amanda, because I knew it was going to be hard on her. A little older lady whose prayer request everyweek is for “the Lord to hurry up and take her home,” quickly said We’re really going to miss you! I’ve grown to like my time in the class and everyone there. The church has been so great and is an excellent substitute for our home family. Only a substitute, though, many of the congregation have urged or joked with us about moving to Nashville. To be honest, I’ve never lived anywhere else I thought I could make a home like Nashville. I really like it here. Though I’ve visited places and said Oh yeah, I’d love to live here but I could see us living in Tennessee for sure. Calm down, Brackettville folks. I said I could live here —we aren’t planning on moving up here…yet!
The church here really has been great. God knew what he was doing in not providing one early on, allowing us to land at Creivewood Baptist, a loving congregation much like ours at home. We are thoroughly blessed to have four different friends coming up to be caretakers and many more who would be willing to do the same. However, I’m confident that our new Nashville church family would fall in and provide meals, transport, and whatever else we’d need. When we walked in last week, one of the greeters was waiting with her name and phone number on a post-it. I’d met her the first week I was there, and she mentioned she was a retired cardiac NP from Vanderbilt and knew many from the transplant program. She wanted to make sure that if we needed help with anything while I was gone, she’d be there for us. There’s another retired NP who works with the youth who’d mentioned the same thing. So I’m confident we’d be well taken care of, even if we weren’t blessed with an already robust support system.
Sunday afternoon was heart wall day. We laid everything out and worked on how to place things. We had various hearts, frames, mirrors, and trinkets to choose from. I, Amanda, would arrange and then rearrange, take things out, then add. I’d throw my two cents in, then complain about how complex the layout was going to be to get right on the wall. This ensued for a good few hours. We finally decided on a layout. I carefully laid it out and measured to have the spacing right. We decided to have it close together and not so spaced out. I got it mounted, and it seemed too close together, but Amanda had a fix for that one piece to make it more cohesive and go above it all. Though the color was off, it was too white to coordinate with some of the other pieces. Amanda talked about getting some stain or using some furniture makers. Then I said, “Coffee,” I thought we could use coffee to darken it. I made a cup, and after a few passes, it matched perfectly. The only thing left was lighting; the bright overhead light wasn’t going to do, and I’d already been eyeing some lights on Amazon. I ordered one and mounted it as soon as it arrived. The whole setup looks great now.
The next appointment we had, besides rehab and PT, was with an infectious disease, ID. We’d be seeing the doc we saw in the hospital. The last one we had mentioned lifelong antibiotics, that wasn’t the case with this doc, though. He said six months, which meant that in three months, Amanda would be off the antibiotics. Though if an issue arose after that, if some of the sticky bug was still on Amanda’s prosthetic knee, the entire thing would need to be replaced. My logistical mind was thinking away. My first question was what about a kidney transplant, how would that affect things, and an additional three months of antibiotics after that. The next question was whether we can opt to continue to take the antibiotics to get us to a better spot to deal with a possible 4th knee surgery. That thinking was a what-if and worst-case scenario, but I wanted us to be prepared and have our ducks in a row. Texas and our ortho and PT team there would be a better option. He said we had a little wiggle room for that. I left that appointment feeling a little more optimistic than the last visit with the other ID doc.
An added pain in the rear issue I had was our long-term renter for our B&B room, who said they didn’t have water. It was after five, and I knew I couldn’t get anything done. I covered a night in a hotel for them until I figured things out. Thinking about it, I remembered I hadn’t gotten a water bill. After calling the next morning, seven days on the dot after the water bill was due, they shut it off. No warning, no call to late slip mailed, just we shut it off a week after with no remorse and no wiggle room. So, after adding the late fee and reconnection fee, I was still required to have someone present to have the water turned back on. I was pretty hot and almost said Well, no one had to be there for you to turn it off, but I held my tongue. The kicker that afternoon: the water bill was the first thing I pulled out of the mailbox; can you say a day late and a dollar short!
The kidney transplant evaluation is next on the agenda. I’m not going to cover a lot on that in this post, as I’ll cover that in a separate post altogether. It wasn’t what we were expecting for sure. Kidneys don’t last nearly as long as hearts, and there is a big difference in how long they last between living and deceased donors. We left knowing we needed to make “kidneys wake up” a top prayer priority.
I’d had a sore throat and had decided I’d see if it persisted; if so, I needed to go to a walk-in clinic to make sure I wouldn’t give anything to Amanda. It only felt worse on the day of the kidney team appointments, so that evening I went to a Vanderbilt walk-in clinic inside a Walgreens close to the apartment. There were just NP at this location, which didn’t bother me. I just wanted to be tested for the gamut, just in case. I left with no advice on anything and a check the Mychart app to see your eating results. On the way out, I ran into Bev’s neighbor. He had some allergy issues, which I assumed was my issue, as well. We proceeded to talk in the cough drop aisle for longer than my wait and visit to the clinic combined! I left feeling like a local for sure, running into someone in the store! By the time I was home, all my tests, flu, Covid, strep, and whatnot had all come back negative. My sore throat was still positive, though!
With my backup coming soon, I was working on “The Amanda Manual,” as I’ve named it. All the pertinent info from the apartment, to locations and directions, to Tank, and most importantly, Amanda, I had everything laid out, including a list of her medications and her scheduled appointments. I was overprepared as usual, with info on what Amanda doesn’t like to eat, to where Tank likes to poop! I’m pretty sure they’ll have question, but there a good chance I covered most of them.
We had an off day the day before I was scheduled to fly back to Texas for five weeks. I had planned to use that off day for us to view the seasonal Smoky Mountain color change. The better idea was to use that day to do nothing on our nothing day, especially since I wasn’t feeling great and my throat had only gotten worse. I was determined for us to road-trip, though. We made a sweeping trip over the Ocoee Scenic Byway and the Cherohala Skyway. We knew we were in the “Smokies” quickly, especially when we climbed up to a few overlooks at the beginning of the Ocoee byway. It had been rainy, but cleared, and the thick cloud, like smoke, covered the valley below. We stopped for lunch in town at the start of the Cherohala Skyway.
We made our way to an easily accessible waterfall, then hit the rest of the skyway. That is when we became intimately familiar with the Smokiness of the mountains. With the impending rain, a thick fog covered the mountains as we climbed. We may have seen 25% of the route without fog so thick you couldn’t see but a few car lengths in front of you. We should have turned around, but I kept thinking it would break; it didn’t until the end of the route. Then the road turned into a narrow, very windy road with many sharp hairpin curves until the end of the route. We drove this race against the setting sun. I didn’t want to be driving that for the first time in the dark! Somewhere in the afternoon, my sore throat gave way to no voice at all. We arrived home late in the evening, but with some memories made.
Jenny, my first backup, arrived Friday morning, and I was scheduled to fly out that evening. We took her for breakfast, a spot I’d been trying to get to but is always busy. Even though we saw a light day earlier in the week when we drove by, I should have known that Friday morning would be busy. A one-to-two-hour wait was a little much, so we opted for our regular spot near the med center. After that, I showed both the girls around and pointed out where to park for Amanda’s upcoming mid-week biopsy. Then we headed to the apartment to get Jenny settled in.
I wasn’t feeling great after our road trip in the mountains; the constant elevation changes really messed with my sinus pressure issues. I wasn’t looking forward to the late-night flight, with the pressure changes in the cabin. My flight got pushed a few hours, and my turn with work wasn’t close to getting out, so I pushed my flight to the next morning instead. Amanda had dialysis in the afternoon, so Jenny and I took care of a few errands before we headed back to pick Amanda up. While we waited, Jenny commented on how much we had going on, all the appointments besides rehab and PT. It really had slowed down a bit, but to fresh eyes it seemed like a lot. We picked Amanda up and headed back to the apartment, then, when traffic died down, I went out to pick up some Chinese. I needed some soup to help calm my throat down. I felt ok, but I began coughing and lost my voice again.
We were up early the next morning to get me to the airport. Jenny had mentioned the Houston airport was bad, with many TSA agents not showing up because of the government shutdown. She said getting through security took forever. I had a checked bag, so I figured I’d better get there early. I never check bags, I hate doing it, but I had my railroad grip with all my work stuff, so I knew it would have a few things that would trip up a carry-on security check, so I just checked it with a few other things. There ended up being an abundance of TSA agents at BNA, and I zipped through with my pre-check.
After finding a seat on the plane, a lady in the aisle seat across from me asked, “Are you Barkley?” I said, “Yes?” She was the daughter of a man who had a heart transplant a couple of days after Amanda. I had kept in touch with her mother, and we ran into them at rehab a few weeks ago. What are the chances we’d sit next to each other, I thought. I talked with her a bit; she was headed to San Antonio for a work conference. I had been meaning to check in with her mother to see how their progress was going. They had a pretty bad run of things, like us, and he had been on dialysis and had also finished the kidney transplant workup the week before us. His kidneys are waking up a bit, and he is now spacing out dialysis sessions. That gave me hope that Amandas kidneys will begin to wake up, too.
I’d hoped to hit the ground running when I go back to Texas, but the fight only made my symptoms worse. I grabbed a few things to eat on the way home and bedded down as soon as I got to the house. I wouldn’t say home because it feels like a shell without Amanda and Tank. I’d been in the house penalty without Amanda, but I don’t think I’d ever stayed in the house without a dog there. It was a weird feeling, plus being sick didn’t help. I had some curbside groceries picked before I arrived, so at least I didn’t need to get anything. The first day home, I was supposed to go to work that night, but I just couldn’t do an all-nighter the way I felt, so I took a personal day and hunkered down. I’ve been home 48 hours and haven’t even been outside, yet. I’m just going to lie low until I get called to work. I guess my body waited until a good time to get sick. It is much better that I can recover here and not possibly make Amanda sick or need to take care of her and Tank while I am sick.
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