I had a post to catch y’all up, then things turned a little South. So, you’ll just get it all in one now. If you just want to go straight to the admission and what got us there, hop to the last few paragraphs. If not, read on.
I am back with Amanda in Tennessee. I flew up last Friday; it was a rough flight up. I did have an exit row, so plenty of leg room. They had the three biggest guys all on the same row. I got a free upgrade to the exit row, but it was a window, so I had nowhere to go. The big marine next to me and I had our shoulders smashed together the entire flight! We didn’t talk much, but he seemed nervous, like he hadn’t flown much.
While in the air, Amanda texted that her hemoglobin was low and that they wanted a stat CT scan to check for bleeding in her abdomen. She and Rhonda were already headed to the hospital to pick up some prescriptions. They didn’t know when the CT would be since they were waiting for insurance approval. The call came while they were at the hospital, about to leave to pick me up. Good thing they were there, since the call was only 10 minutes away from when they needed to be there! I didn’t wait long since I had a checked bag. I didn’t even know where to go to get my bag; I hadn’t flown with a checked bag in years! So, it took me a bit before I was ready to go anyway.
Amanda had her eyes on a worship night at a clothing store in Franklin. This is the store with the prayer room inside. Needless to say, it is Amanda’s favorite store here, and if we were flush, she’d be buying more there. I fear that store is going to hurt the bank account when we come back for visits later on! You can see pics of the store in Brittany’s journal entry, Biblical Hope, from back in December. They picked me up, and we headed straight there. It was a little packed, and towards the end of the set, when we arrived. It was just a younger girl who worked there, singing with her guitar. No amp, no mic, just a low-key worship set in the foyer area of the clothing shop, where some sofas were. Amanda was adamant that she didn’t want to sit down, even after being promoted by both Rhonda and me. I told her that if she eased up with her walker and looked pitiful, someone would surely relinquish a seat! She still refused, though.
We stayed a while, then as we were leaving, a lady asked if we needed prayer. It ended up being the owner and her husband. She prayed, then there was a long silence without an amen. It was long enough for me to open my eyes, thinking that was it. Then the husband began praying eyes open. He said he was seeing what was like a bird in a cage with the door opening up and it finally being released and able to fly away. He continued with that word for a minute, praying from his heart; it was moving to say the least. I know between the three of us, there wasn’t a dry eye. He finished, and a mother and daughter prayed, as well. When they were done, Rhonda, tears in her eyes, said, “Nailed it, you have no idea, but you nailed it, looking at the husband!” It felt prophetic to say the l least. To think of what we’ve been through this season, for so long, so many days in the hospital, feeling trapped in a foreign land, Amanda having only been home once in the last year, the separation we’ve had to deal with, and on and on. So, being released from a cage was all too fitting. It was a powerful experince.
Saturday morning, I was up early to get Rhonda to the airport. After I got back, I let Amanda sleep in a bit. I was doing my Bible study in the living room when I heard her get up. I heard a sound I haven’t heard in a while, her peeing! We’re very familiar with pee right now, with Amanda measuring every bit of it for the kidney team follow-ups. She’s been mad about how much she’s getting up to go to the bathroom in the middle of the night, something she hasn’t needed to do in a year. While I was in the bathroom later on going myself, Amanda yelled out from the living room, “That sounds like a solid 300 mLs!” I told you we are intimately familiar with pee right now!
Tank has been pretty happy since I’ve gotten back. I think everything was getting back to normal for him. He is pretty particular; when we feed him, he has to make sure we are sitting down in our chairs before he’ll eat. Surprisingly, he didn’t get bent out of shape when we moved the dialysis machine out of the living room to the guest bedroom. Mostly to have it out of sight, but it was nice to be able to see each other since it was right between our recliners. It was an easy day and DoorDash for dinner.
We were up for church, it was good to see everyone. We hung around talking to everyone afterward. Then I heard someone a few pews back say, “You look like someone who got a new kidney!” We went to lunch with Bev, Sam, and the girls. It was good to hang out with all of them. I don’t know if I got something on the plane, but later that afternoon, it was like a switch; my throat just immediately started hurting. This isn’t too uncommon for me; if I sneeze too many times, I’ll have a sore throat. So I wasn’t worried until I woke up with it on Monday.
Amanda’s main anti-rejection med level was low, half what it should be. So, we were taken aback when the doctor didn’t change the dosage. Amanda pushed to have the level checked again, even though they wanted to wait a week. So, on Monday, they called in some labs to a walk-in clinic to check that level and a few other things. I decided to get checked out myself. Amanda’s rejection med came back lower, so they adjusted the dosage, but the other labs came back looking good, though. My stuff came back clear as well, no strep or covid.
I was feeling rough, so it was nice when we got a text from someone from church that they were bringing us dinner. It was actually someone from our Sunday school class who’d already brought us dinner when we first got out of the hospital. She even brought Tank some cookies, too! She stayed and chatted a while. She was funny, asking if the apartment was furnished, saying it looked like a show apartment! Nope, just our stuff with some assistance from a gay interior designer I met at a burger joint, and Amanda’s finishing touches!
Amanda had her first rehab session on Tuesday earlier in the week. We’ve had some sort of appointment every day of the week. There was no break, which I was really hoping for since I wasn’t feeling good. On Wednesday, we had to be at the clinic early for a follow-up with the kidney NP. Since they don’t get labs early, there isn’t much to the appointment. We just go over any issues, Amanda’s ins and outs, and her vitals from home. Amanda did get the staples out of her incision, so that was nice. Probably 20 or so of them along the 8-10 inch scar. The kidney levels were trending downward, and we were close to getting to the number we needed for her creatinine to lose the dialysis catheter. Amanda is most excited about getting rid of that. Since January of 2025, she has had some type of line in that she’s had to wrap to take a shower. She is ready to be line-free! When we got back from that appointment, I passed out for about a 3-4 hour nap! I never nap, even with my railroad schedule. It’s rough being sick and caretaking at the same time.
I haven’t been cooking at all, aside from some toast or whatnot, so it was DoorDash for dinner. We’d been blessed with a good many DoorDash gift cards, and we still had a big balance. The dishes were piling up a bit, and I had pile of towels I’d moved to the loveseat to fold later. I told Amanda that what I really wished we had was a dish-and-laundry fairy to come by!
Thursday, we had the heart team year follow-up. They were planning on doing a left heart cath, but had pushed it to September since the new kidney didn’t need to filter IV contrast, which was needed for that cath. We do have a right heart cath and biopsy scheduled for late July. I asked that the appointment be scheduled next to our late July kidney follow-up. I also rated out the kidney team for not managing Amanda’s main anti-rejection medication well either. I had already snitched to the heart coordinator, I was nice, but mean in the same MyChart message, which all teams can see! I made it clear to them that I wasn’t happy with running half the goal level for so long. The heart NP said to reach out and that they would gladly adjust the dosage if we felt it was needed, mentioning they are a bit of a control freak when it comes to that! Surprisingly, the kidney team would run things for the year following the transplant. I was impressed with the heart team here, not so much with the kidney team.
Amanda’s labs came back with her kidney levels trending in the wrong direction. Not a surprise since they had lowered her diuretic dosing and then stopped it. Since then, her output slowed significantly. She had fluid retention, and it shifted to her upper body rather than her lower extremities. I noticed her face was different from the week I was home. That was mostly due to the high steroid dosage, causing a moon face. Yet, it seems to be getting worse. I also notice distended veins in her neck and head. On the way to the rehab appointment, she messaged the kidney NP we’d just seen. She told her to take an extra dose of diuretic, and if it wasn’t better by the next day, she’d likely need to be admitted. Not what Amanda wanted to hear!
After rehab, we made it to a farmers’ market in another church’s parking lot near our church. Amanda found some sourdough she loved there, and we needed another loaf. We also grabbed some Peruvian empanadas from there for dinner. Add some fresh corn on the cob for dinner, and we had a meal. Friday, we’d be able to sleep in since we didn’t have an appointment till after lunch.
Sleep in, I did. Amanda and Tank were both up and in the living room when I finally woke. I still had a sore throat, but was feeling better. Amanda, however, had a sore throat, it finally caught her. Amanda didn’t look good, and the swelling was only worse. I didn’t say anything, but we both knew she would need to be admitted. When she was getting ready, she showed me her neck. The fluid was built up on her chest, trap area, and neck, making her look like she pumped iron in the gym all the time. I would not approve if this were Amanda’s regular look. Women with big trap muscles scare me! As I pressed on the fluid build up, I told her you know you have to go to the hospital. She whimpered a yes; she was dreading going back to the hospital.
On the way to the doc appointment, she messaged the NP. The instructions came back to report to the ER. Not what either of us wanted to hear. I can’t stand ERs and was hoping for a direct admission, but no luck. From then on, Amanda was just despondent. She really didn’t want to go back to the hospital; she’s over the hospital admissions after spending more time in than out last year!
I can’t stand ERs, did I already mention that? Security is a pain to get through, so much stricter than the regular entrance. Sick people everywhere and always a rough class of citizen in there in the evening or weekends, if you know what I mean. There are never enough rooms, and sick people always line the halls. Vandy ER is no exception to those rules either. After Amanda was triaged, the nurse moved us to a more secluded waiting area since she was immunocompromised. At least she wasn’t put on a gurney in the hallways like many others! The transplant status usually gets us a room, at least, not something to boast about, but a welcome perk.
As the ER doc came in, Amanda’s phone rang; it was the Vanderbilt heart transplant team. She handed me the phone, and I took notes from a coordinator, with a few changes from Amanda’s follow-up the day before. It wasn’t the regular coordinator but a nice fellow helping out while our regular coordinator was out. I should have been in on the doc convo, though. When I got off the phone, I heard him say something about SVC syndrome, something that had plagued us many years ago. He was correlating that with Amanda’s upper-extremity swelling. I may not have an MD, but that wasn’t the issue. Her SVC was completely reconstructed in the first transplant. This ER doc was chasing zebras, and all I wanted was to talk to the kidney or heart team. He kept speaking of CT with contrast, which we were adamantly against. We didn’t want to stress the new kidney bean out and make it filter that junk.
I had to go to bat with the ER lead doc, too. I pretty much just said, “Look, we’re not ok with doing anything with contrast.” This was chasing down a wild lead that wasn’t needed; I didn’t think we even needed to entertain the idea. The kidney surgery team finally showed up, the one I named Wednesday. She was chipper for her usual down-and-out self! She thought the SVC stuff was nonsense too, and was against the contrast CT. From then on, we didn’t hear much more about that. The plan was to admit Amanda and get the fluid off.
We hung out in a tiny ER room, and after a few hours, we were moved to a “you’re going to get admitted, but we don’t have a room for you yet” room. Did I mention I can’t stand ERs? I just don’t understand why, as a transplant patient, we couldn’t just stay at home and wait till they have a room on the transplant floor available. We’ve done that here and in Houston, and it’s so much nicer. After passing many sick people lining the halls, we ended up in a nice and quiet unit for the interim until we get a transplant floor room.
As of now, we don’t know much. Amanda already had a bolus of a diuretic, but it hasn’t produced much. I grabbed some dinner from the cafeteria, and we’re just in wait mode now. I won’t be staying the night. I’ll head home to get some decent sleep and check on Tank. I’ll update as we know more.
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