Busy Day of Testing

I’m livening the place up a bit at a time. We brought a couple of blankets, one from our church and a prayer blanket from a friend’s church, and added them to the room. Slowly, it’s going to be a nice home for us. I still have the rolling cart that we used for Amanda’s Bumex and PICC supplies to bring up. It will now be a snack and crafts cart. It’s already assembled, so I’m just going to roll the thing in all loaded up like I own the place! The dresser is filled to the brim now; I’m already dreading moving out of the room. We better not have an incident like at St. Luke’s, where they sent us to the CVICU for a few hours, and we lost our room and had to move out. 

The PET scan was this morning at 11, and then they put her as an add-on for a left and right heart cath with a biopsy. A new PA, a guy, came in early before the team to go over things. We inquired about the MRI; it appeared to be normal and didn’t show any restriction per se. It did show CAV (Cardiac Allograft Vasculopathy), a type of coronary artery disease for people who’ve had a transplant, likely caused by the rejection. We inquired about the liver biopsy, though the main pathology wasn’t back, the early ones were enough for the liver team to clear her. There was no cirrhosis. The PA was pleasant and thorough, taking the time to answer our questions. He said the cardiologist called in a favor to the doctor doing caths today to squeeze Amanda in. 

The team followed the PA shortly after he left. The cardiologist noticed our flowers quickly! He said the MRI showed EF (Ejection Fraction), the amount of blood that leaves the heart with each contraction, was good. Even with Amanda’s heart failure prior to transplant, she had a preserved EF. The MRI did show some issues with the lining of the heart, which was likely the CAV. As is typical with her, things are unusual! 

There was talk about the kidneys again. The level was elevated, and the doctor was concerned, wanting the renal transplant team to consult. I mentioned that metolazone affecting her kidneys, but he said this wasn’t due to that, but possibly because she was too dry. Amanda says her tummy still feels like she’s holding some fluid. She was already up 2 pounds and didn’t drink much yesterday. The diuretics were still held for today. So they’ll see soon enough. Amanda and I both questioned his diagnosis of the kidneys. She had a bunch of contrast from the MRI and the CT. The kidneys still have to deal with all of that, plus the diuretics. I’m no doctor, but I’m pretty sure all of that would make the kidneys mad, too! I get it, the doctor is worried about the need for dialysis after the transplant and the possible need for a kidney.

Everything they are doing is to ensure all the ducks are in a row to achieve the best outcome after transplant. They are being far more thorough than St. Luke’s was. As I listened to him go over the details, I almost got the feeling that they were leaning toward not listing, and I got a little worried. The doctor must have sensed that and said that a transplant is the best option. The thing is, it’s just not that cut and dry. He said that he was just going to be humble, which was probably hard for him, and say they just don’t know the best course of action yet. That seemed to be the feeling of the entire team, he said. Speaking of retransplants, he said they can go well, but when they go bad, it’s very bad. They don’t want her to be in worse shape than when she came in, he said. Her case is so complex and needs further testing so they can do their due diligence and make sure of a good outcome for her next transplant, and the next one lasts a very long time. I second that and feel a little more at ease with the timeline now.

They are just being very thorough, and I like that. It makes me feel we are in much better hands. After they left, as I stared out our window, I told Amanda that it was in our best interest that we were denied in Houston. I also feel we won’t be transferring care back to Houston after this, but we’ll see. This is the place to be for sure, no matter the hardship it is putting on us. I feel good about our decision, even if I have been frustrated that we weren’t listed yet. When we were denied, it was a rough patch of uncertainty for us. The darkest time in this round of heart trials for sure. If you were following us during that time, I think you felt that in my posts. That is when I put Amanda on restriction from reading them, I didn’t want her to relive those moments. All of that darkness and fear, even in the midst of knowing God was in control and would see us through, we were still scared. God has used many trials to get us to the right place, whether that be physically, mentally, or spiritually. Many dark times just to see us through to the other side. We are in the right place now.

The cardiologist is all business, but when he’s done with his spiel and gets ready to examine Amanda, he will lighten up a bit. I’m much the same, very focused, and all business, but when that’s over, I can be a jokester. As he got his stethoscope out, he said What’s next in here, referring to the newly added flowers, a whiskey bar? Amanda quipped back You can’t have any if I can’t! I chimed in and said an espresso bar. Everyone agreed with that saying, we might have a line out the door of nurses! The doctor said, Maybe a DJ stand! And as he left the room, he made the best white boy beatbox bass sounds he could!

I got in touch with the owners of the basement apartment yesterday to check in since I hadn’t heard back. They had been busy and hadn’t had a chance to talk yet. They needed some specifics on when we would move in. It all depends on the price for us, and I explained we might be able to take it soon. Ideally, I could have a place to go get a good night’s sleep, meal prep for us, and do laundry now before transplant. That way, we aren’t searching or placing and worried about getting everything moved in while a million things are going on after the transplant. I can get us settled, and when Amanda gets out, everything will be set up and ready. Also, if Amanda were to, god forbid, get discharged for the wait, we’d already have a home. The place is a two-bedroom, one bath, with a kitchen and its own laundry. It’s a few doors down from our heart friend in a really nice neighborhood. There is a yard for Tank, and they had no problems with him coming. I’m telling you this one worked out better than the apartment in Houston. After hearing back from them the caveat is that the price is higher than I expected. With utilities, trash, and internet included, the total would be significantly lower than anything decent around here, and still lower in total than our Houston apartment. Yet more than anticipated for a basement apartment.

So we have a lot of deciding and praying to do. Getting it now is the best option, of course, if Amanda sits in the hospital for six months, then I may think differently. One of our friends who is moving our stuff out of the apartment is coming up here in early July and can bring them, likely without even unpacking the trailer. Things are lining up, and we both feel now is the right time. I’m just looking for a bit of confirmation. The Houston apartment, which we are still paying for through July, was a good move for us, even if we are still tied to it. I was torn about whether to get it, how long to commit, and so on. It lined up so well, I never even toured another. I feel this is the same. I really felt the confirmation with it, too, after praying over it. It’s a commitment to hop into an apartment here, 18 hours away from home, especially doing it early before transplant, but I still feel, even with the delay, that the time listed will be quick. We discussed this last night and are waiting for a few things to fall into place to determine if it’s the right move. We could use everyone’s prayers on this. Speaking of the apartments, I forgot to share photos of our finished apartment in Houston, which is now all packed up and will be loaded onto a trailer tomorrow. So here you go:

While Amanda was back for the PET scan, I went to find the post office. I’d asked yesterday where it was, I thought it was in the basement of our building, the north tower. I heard wrong, it was in the Med Center North building. There are too many buildings that are not connected here. I’m used to everything being connected, even different hospitals are connected in the Texas Medical Center. I had to go out to the other building and go through security again. This place is locked down tight with many door exits only. It feels like the covid days when they were tight on security. I got in trouble for not having a visitor tag on. After securing the proper tag, I followed the security guard’s instructions to get to the basement. It was kind of a creepy basement with a low ceiling and long corridor halls, I’m talking 200 yards long! I dropped my package off and got out of creepy town!

It was forever before Amanda returned to the room. She said that she waited a while before she went back for the actual scan. Once back, the nurse called the PA to let him know she was back and to ask if we could get a hall pass. I asked her before Amanda left if she’d check with the team to see if we could go outside. After talking, they said we could go, but wanted us back in 45 minutes, in case they came to get her for the cath. So, she put on some real clothes and we went out to the courtyard to check out the farmers’ market and get some fresh air. It was mostly food, one booth had fresh produce. If I were cooking, I would have loaded up. We ended up getting stuff from a few booths. A loaf of fresh sourdough bread, a few heirloom tomatoes, some hot sauce, and pretzels. Amanda was NPO, so she couldn’t eat, but it was late and I was hungry. She gave me permission to eat in front of her even though she couldn’t eat, so I grabbed a few tacos. I didn’t tell her, but boy, they were terrific. Corn and zucchini on a fresh blue corn tortilla. I’d asked for no cheese, but I still got it, and I’m glad I did. It was cheese melted on a grill top and made crispy, which was on the tortilla and filled with the veggies; it was fabulous. They are there every Thursday, and so is the produce stand guy; we’ll be frequent flyers to both of those stands in the future.

Our Nashville friend was in the area and had another package for me: the refrigerator. She came and stayed a bit until they came to get Amanda for the cath. We followed and sent her off, then I went to the garage to transfer the fridge to the Yukon to get it out of the box. I opted for a travel one so as not to arouse suspicion, and for something we could use afterwards. I figured toting a huge package might raise eyebrows with all the security around. I got it all ready, put one of Amanda’s cutsey bags on it, and rolled it in like I owned the place. It was searched thoroughly but not confiscated. I got it plugged in and hidden behind my chair.

I then went to the cath lab waiting after. The cath lab tech took us to a newer part of the hospital when we went there. It took a badge to get back the way he took us, so I had to backtrack to find my way in. Slowly, I’m learning my way around here. I waited for a while and noticed that all the numbers corresponding to a patient (I didn’t have Amandas number) on the board were slowly changing from ‘procedure in progress’ to ‘in recovery’ or ‘transferred to an inpatient room’. All of them eventually had that. I had the feeling that she was already back in the room and was about to go check when a nurse came in to ask who I was waiting for. She went back to check and found that Amanda had already been in her room for about an hour. No one ever came to see me; it felt like I was back in Texas. Dr Nair never comes to see me after a cath.

When I got to the room, Amanda was lying flat but at an angle. They weren’t letting her raise her head at all. Her back was killing her. I questioned why she couldn’t have her head up a little. She was on 4-hour bed rest because they went through a larger artery. Usually, an hour and a half, they’d let her raise her head a bit. The procedures here seem to be pretty strict. I swapped her pillows and put one under her shoulders a bit to help, but she was still in pain. She was off bedrest at 10 pm. I went to grab some Amazon packages at the locker nearby and grabbed a refresher from Starbs while I was out. We had to wait till 10 when Amanda could get up before we had dinner. She’d been gone all day without eating. 

Outside of prayers, I think it would be great to send cards now. The address is quite lengthy, though. VUMC Medical Center East North Tower, 1215 21st Ave. South, Unit 7 MCE Room 7722, Nashville, TN 37232. Also, for you crafty ones, I have a request. I considered asking one person to do this, but I think that if we had multiple people, it wouldn’t hurt. There is a room plate outside of Amanda’s door. It has the room number and a nameplate slot. They haven’t put her name in hers yet. Most have just the patient’s last name, some have last, first initial, and some have last name, first name. So, if you’re a crafty one, and you choose to, maybe make a colorful nameplate for Amanda’s room. She loves turquoise, rose gold, burgundy, and pink (not the bright Barbie or Pepto pink, though). Name with colors, flowers, paint something, or whatever you think she’d like. On something like a heavy paper or cardstock, but not too thick. It needs to have the last name first; other than that, creator’s choice. The measurements are 9” wide and 2 1/2” tall (see pic for reference). I feel someone is going to have fun with this!