I’ll do my best to catch you up quickly since my last post. I’ve been busy with work and haven’t had much time to write. Now that I’m back in Tennessee, I’ve got a little more time to catch y’all up. Amanda spent three days in the hospital after the last biopsy due to the rejection still hanging around. Well, three calendar days, but only 48 hours. They didn’t do anything different than the last time. High-dose steroids, then discharge, wait and see. The next biopsy was scheduled for a couple weeks later, which will be this Thursday.
They have downgraded her on the renal side of things. The nephrologist moved her status to end-stage renal failure. Though this is just a status change, it is still a little disheartening. We are still holding out that her kidneys will wake up! I still owe y’all a solid update on the kidneys and the evaluation from the renal transplant team. I’ve just been busy, and we have been focused on the heart with the rejection.
As you know from the last post by Brittany, she swapped out with Rhonda and spent a week with Amanda. It seemed her lighter schedule (to us) was still packed and busy for everyone who came up to help. Brittany said Amanda wore her out! She had all her doctors’ appointments, labs, rehab, and PT, but she still wanted to get out and do a little shopping. I think she got better and better with each one who was here helping. Feeling even better when Brittany arrived, she wanted to go out and do more shopping and thrifting. Amanda has already worn me out, and we’ve only been going out and shopping, not much of the regular hospital routine, yet. She is still finishing up the Christmas decorating of the apartment, too.
I was slated to fly up on Saturday. I got off work on Wednesday after taking a train back from West Texas in the wee hours of the morning. I wasn’t able to line things up to be able to make one more trip, so I wanted to fly up early, but it would have cost an extra $500. That cost was a no-go, so I thought of renting a car. I needed to mow our downtown property since there will be a big Christmas event that borders our property next weekend. It’s been hard to keep up with things, there being a 1000 miles away, but we’ve been blessed with friends who have just gone and taken care of the yard for me. I got off work and went straight to take care of the yard. I was still deciding on a car rental, at only $70 a day and no relocation drop fee, it was cheap and enticing. To make it feasible, I’d only need to keep the car for one day and drive straight through. So I set a time limit to make the decision. I told myself I needed to decide by the time I was done mowing.
I’d made my mind up, so when I finished mowing, I canceled my flight and left to get the rental car. I thought after an early morning return trip on a train and then driving all night, I’d spare Amanda the anxiety of knowing I was driving up not rested and not to tell her, making it a surprise. When I got back to our house to pack, I was still deciding whether or not I’d take a nap. As I was wrapping up packing, I popped a melatonin gummy in my mouth halfway, thinking I’d get a few hours’ nap, but was still deciding. I walked around, thinking, then decided, “Ok, I’m leaving now.” But the gummy had already dissolved! I wasn’t ready for a nap, so I hopped in the shower and said that if I still weren’t tired in 30 minutes, I’d leave. If I only take melatonin, I can still work an all-nighter, usually, no fun, but doable. Showered and still wide awake, I rolled out at 9 pm. I fought the melatonin tiredness for an hour or so, then it was just normal sleepiness.
I wasn’t sure if Amanda was suspecting anything, but I still made it a complete black op. I deleted all Ring camera recordings that included the rental car, turned off location tracking on my phone, and killed the internet to the apartment Ring cameras when I dropped my stuff off, just in case! I rolled into Nashville just after noon. Fifteen hours and 15 minutes is the time to beat now, which shouldn’t be a problem since the little rental crossover got bad mileage and had a small gas tank; I had to fill up 4 times. With the Yukon, I can make it with only one stop; solo, that is, no way Amanda will go for a one-stop trip! Britt picked me up while Amanda was at a pre-appointment test under the cover that she needed to let Tank out. Then we picked Amanda up. Britt went in to get her, then when they came out, I was sitting shotgun! Amanda wasn’t paying any attention and opened the door without even noticing me until I said, “Hi!” I had lunch with them, then was able to go to Amanda’s pulmonology appointment with her.
The pulmonology appointment shed a lot of light on things. The test Amanda had before the appointment was a pulmonary function test (PFT). She’d had plenty of these tests before, but they made her do this one while lying down, as well. That was pretty rough for her; she wasn’t too happy about doing it lying down. Turns out she only has 46% lung capacity while sitting and only 23% while lying down! So, all the thinking she was nuts, some doctors seemed to imply things were fine, was bull. Now we have proof that what she was saying was true. Sometimes, each doctor should stay in their own lane; just because you’re a top cardiologist doesn’t mean you know the lungs that well, or at least like a pulmonologist does. Turns out this is common in heart transplant patients. It is like many other issues after an extended hospital stay; her muscles are weak and need time to get stronger. You use more than just your lungs to breathe, the pulmonologist explained. You use your chest, abdomen, and even your neck muscles to help get air both in and out.
It looks very much like Amanda’s left diaphragm is paralyzed, but still shows some movement. The pulmonologist had her apprehensions that it wasn’t paralyzed, though. This was an issue after the first transplant. Amanda had a paralyzed diaphragm then, but it did come back without intervention. We learned then that the phrenic nerve is the culprit in diaphragm issues after open-chest procedures. It has a sheath around it, and if damaged, it takes a while to grow back, 1 millimeter a month. This is likely what’s happened to Amanda, as well as the muscle atrophy. At a growth rate of 1mm a month, it could take quite some time, though.
After the plum appointment, we had the evening off. Being Brittany’s last day, they were headed out to play. I needed a nap, so they dropped me off at the apartment first. I got busy unpacking and putting things away; I never even got a decent nap. I took a shower, got into my PJs, and eased into my chair. I only got a few minutes of shut-eye before the girls showed back up. Bev had met with them to go to another store, so she dropped by the apartment to hang out a bit, and her husband, Sam, soon followed. I’d seen more friends in the few hours back in Tennessee than I did in five weeks at home!
Friday, Britt was flying out in the afternoon, but Amanda had an appointment first. She took her to the appointment so I could sleep in, then I met up with them for lunch before dialysis. Then I dropped Britt off at the airport. My Nashville friend, Joel, lives not far from the airport, so I met him, and we caught up. After picking up Amanda from dialysis, we went back to the apartment. Amanda was still working on the tree and some Christmas decorations. I cooked dinner, then we settled in. Amanda was still in go mode and was up later than I wanted to be!
Our schedule will be busy this week, but I’m hoping it will slow down as it gets closer to Christmas. I did get us a show booked, For King and Country, A Drummer Boy Christmas show at the Grand Ole Opry. I got them weeks ago, so I was able to get decent seats that didn’t require Amanda to take any stairs. It takes a lot of research to see which seats have stairs at events, this one was no different. I wasn’t in the Christmas spirit until just before I drove up, but I’m in full Christmas mode now, arriving and seeing all the lights and decorations everywhere. The colder weather helps set the mood, too!
Speaking of a Christmas mood note, please send us Christmas cards. We have a tradition of opening them in bed on Christmas Eve. So we’d love to get a card from everyone. 370 Oakley Dr, Apt 704, Nashville, TN 37211.
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