I haven’t been that hardcore this round as I have been in the past. I’m not checking Amanda’s MyChart for labs first thing in the morning or even standing in our pre-rounds in the hall. I don’t know as much on the kidney side of things as I do on hearts. We aren’t on a touch-and-go basis as we were in the ICU. I’m not grilling all the doctors, bombarding them with multiple questions or senecios. I haven’t butted heads with any doctors yet, just a nurse or two. Let’s just say I’m not nearly as much of a pain in their you-know-what as I can be and have been before!
The baby surgeons came a little later today than normal. I had set an alarm early so I could get up and take a shower before everyone came by on rounds. I promptly shut off my alarm and went right back to sleep, though! I got up about 45 minutes later and took a shower to summon them. It doesn’t matter what I’m doing in the bathroom; that is always the way to bring any doctor in! It worked just as I got out of the shower they baby surgeons showed up. Not much new, except they are going to switch up her diuretics a bit.
The nephrology team came by later than I was expecting. Since it’s a new week, we got a new nephrologist. This was a more mature doctor, the oldest we’d seen yet, but still young and in his late 50s, I’d assume. I liked him; I could tell he was a good teacher, stopping to go over things with his baby chicks in tow, speaking of different studies and whatnot. They are holding off on dialysis, which I am happy with. I figured starting dialysis isn’t a good idea. Which he confirmed, saying that in his experience, starting dialysis slows things down, citing a case study as he looked at his minions, which now confirms that very thing.
I had looked at Amanda’s labs this morning and saw her creatinine and urea had both been trending up, not a good thing. So, I asked about it. He said it was as expected, but typically it reaches a point where the high level forces the kidney to open and start working. He also mentioned staying away from high-potassium foods. They aren’t following a full renal/dialysis diet, and some restrictions have been lifted, but potassium remains a concern. I’m so ready to get back to our normal whole food plant based lifestyle. We had to abandon it since most of what we ate was restricted on the dialysis diet. I’ve gained way too much weight over the last year and a half of all the hospital food and eating out. I feel like crap compared to how I felt with our whole-food lifestyle.
They swapped diuretics from Lasix to Bumex. We’d been on both before, but the latter works better for Amanda; for the time, she was on both. In the pre-heart transplant days, we were doing Bumex pushed via IV at home. That was pretty uncommon, and the heart team here has mentioned multiple times how they wouldn’t have allowed that. The nurse was giving meds and had two shots to give Amanda. Heparin, a blood thinner commonly given while inpatient to prevent clots during periods of inactivity during hospital stays. The other I didn’t know and questioned about. I looked it up quickly and found it was a med Amanda had been on and even given herself a shot of at home. It is to boost red blood cell count; the nurse was just using the generic name. That is a new thing they are doing, using generic names instead of brand names. I don’t know why they have to have so many different names for drugs! She was preparing a bolus on the IV pole, and I asked what it was; it was the diuretic. I questioned the dosage, and then the nurse seemed a little perturbed by all my questions! Get used to it, sweetie, I thought! And I’ve been relatively chill this go around. I feel like all of this is a cake walk after the heart!
We always have our curtain open and most of the time the door open as well. Same with the lights and window shades. Hospital rooms are gloomy enough to stay cooped up in, so we like to have it all open. A physical therapist walked to the nurses’ station across from our room. He recognized me and gave a big wave, then came in to chat with us. He said he was surprised to see us on this floor versus the heart floor. He was a really good therapist with a great attitude and a soft demeanor.
I’m simultaneously working on a post with a wide-lens view of everything from the 2nd heart transplant to now to sum it all up. It has been just over a year that we’ve been at Vanderbilt. That’s hard even to believe; it feels like we’ve been on this road for five years. As I was looking back, even going through some old posts, it really stirred things up. It’s been one hell of a ride for sure. I don’t think I’ve ever been on a roller coaster of emotions as we have over the past year. From the lowest of valleys, the hardest trials we’ve ever faced, doing it solo and apart from each other for a significant portion of this year. It seems we are on our way up and out of the valley. God is doing something and producing something we can’t see yet. But I feel Him lining things up and know He’s got something coming.
I saw something that really hit me. It seemed to be from a sermon, and I wish I knew who the pastor was. “Sometimes God doesn’t calm the storm because the storm was never the problem. Sometimes He lets it rage so He can calm you. That situation wasn’t meant to break you; it was meant to build you. See, everybody wants peace. Everybody wants clarity. But nobody wants the pain that produces it. But growth doesn’t happen in comfort. Strength doesn’t show up in silence. The storm reveals who you were but also who you are not. That’s the gift; the storm exposes the lies. It exposes the weaknesses. It tore away everything fake so God can show you what’s real. So don’t pray it away too soon. Let it do its work. Let it shape you. Because storms don’t destroy purpose. They reveal it. And on the other side of this, you won’t just survive; you will thrive. You will stand different, believe different. Because when you have been through real pain, you speak with real power. That’s why He let it hit you. It was never about the storm; it was about what it woke up inside of you.”
That’s where we are. I’ve grown more and had so much stripped away from me over the last year. God has really gotten a hold of me and revealed a lot, especially in the last six months. I go back to when one of my old students came to see us while they were in Nashville. His mother prophesied over us and revealed what I was already talking to God about and no one else, and spoke specific scripture to me that God had already laid on my heart in my wrestling with Him. She said God needed me to go through this to be prepared for what He had in store. That was powerful at the time, but I didn’t fully understand its weight. Things have since lined up; the Lord has spoken to me in many different ways, confirmed things through Scripture, and given me peace, calming me where I once had anxiety. That is how I know it’s of the Lord. I’m eager to be done with this phase of our lives, this extended trial, but excited to see what God has in store for us.
The surgical team showed up late this morning, after 9 am, which was surprising. A case of the Mondays, I guess. I’m gonna squirrel on a movie connection here: the off-the-wall 1999 comedy Office Space! There is a frustrated computer programmer who sits down with his un-couth blue-collar neighbor. The programmer asks the neighbor whether someone at work had ever said, ‘Sounds like someone has a case of the Mondays!’ The construction worker neighbor responds after a pause, and I quote, “No, no, nah man, I believe you’d get your ass kicked saying something like that, man!” I haven’t seen that movie in years, but I remembered that scene as soon as I typed “case of the Mondays”, though!
The late ‘case of the Mondays’ team stood in the hall doing their pre-round chat. It took them a while, and I wished I’d been standing in on the extended rounds. The extra time was to allow the new surgeon to catch up. A younger man, 30s I’d guess, with an epic handlebar mustache. He had an easy look about him, the kind of guy you’d want to sit down and have beer with. I could tell he was the boss as he stood listening to one of the baby present Amanda’s case. But I thought, ‘maybe not,’ because of his laid-back look, plaid shirt, and stache. I guess he doesn’t let the chickadees in the room, because he came in solo to chat with us. I like him, and didn’t get the typical surgeon attitude from him.
They still wanted the autonomics team to come in about the blood pressures. I mentioned again that her BPs were good when she was getting up and moving around. That is expected, he commented, but I was more getting at the idea that if we were home, she’d be up and around more. He had already mentioned that there was no need for us to wait in the hospital and we’d likely be able to go home tomorrow.
I had been hanging around waiting for rounds to get a coffee. So, when surgery left, I darted out to get a latte. There was a newer girl taking orders. She asked the regular barista if what she wrote on the cup made sense. She looked at me and said, “Yeah, we’ve done this dance before,” remembering my order by heart. I chimed in and said, “Many times!”
The autonomics fellow followed not long after; I retrieved my coffee. He wasn’t on board with the BP med change the surgical team wanted. Saying it was essentially the same medicine, also mentioning that it was more expensive. That last tidbit I thought was odd. The only time I’ve heard of a physician speak to the price of a medication is when the insurance likely won’t cover it. We have insurance; to be honest, I don’t care about the cost. Amanda had already been on the 7th most expensive drug in the world, $150k a dose, for her rejection back in Texas. So, I wasn’t too worried about the cost of a BP bill! Either way, he didn’t approve and mentioned he’d be back with his attending later in the day. He did mention the sleeping medication Amanda is on does the opposite for BP, lowering it. Saying they may need to find an alternative for that. I’d rather see her off the muscle relaxer to help with BP; that med knocks her out.
We got our first walk of the day in late since everyone was running behind. I did get two full laps out of Amanda. As we rounded the back corner of the nurses’ station, Wednesday stood up and cheered with her hands in the air, saying, “Yay.” I nearly fell out. I didn’t think she had a “Yay” in her anywhere! Amanda said you just got to give it time to work on them. Right after that, we saw an ultrasound tech that I noticed. As she passed us, she recognized us as well and backed up to ask how we were doing. We recognize so many people after being here so long. It’s appreciated when they stop in to say hi, too.
The autonomics fellow came back with his boss. They were both on the same page: the alternative BP med wasn’t needed. Her blood pressure when they came by, right after a walk, was normal. The other drug the surgical team wanted to swap to could be prescribed, but getting insurance approval was hard; that is where cost came into play. Insurance would require a few hoops to be jumped through before they would approve, and they didn’t think she’d meet the requirements. That said, they still didn’t think she needed the other drug, or any for that matter.
We had a few visitors in the afternoon and early evening. Another heart patient friend from a pacemaker blog, Amanda, was on years ago. She happened to be at the hospital herself and just popped in to see us for a bit. Later on, Bev and Sam stopped by. Bev is leaving with her girls for a while and wanted to make sure to see Amanda before she left. They ended up not letting them both back to see us; someone was being a 100 percenter and following the 2-visitor rule to a T! So, I went out to let Sam come back and ended up smuggling him back instead, you know me, and I’m not a rule follower! Our nurse, whom I thought was cool, ended up being the rule-nazi and busted us, sending one of us out later on. I volunteered as tribute; Sam ended up coming out to sit with me in the lobby after a bit. It was close to shift change when the nurse kicked us out, so I was just waiting. When I saw her leave, I grabbed Sam, and we scurried back in without issue!
Overall, Amanda’s I’s & O’s have been getting better. I haven’t needed to hound her as much about drinking; oh, I’m still hounding, though! We’re improving, just slowly. The social worker came by today to check on us and see if we needed anything. Also, the NP caught us in the hall asking if we needed a walker. So those are indications that they are ramping up for a discharge. Also, when I walked by the scrolling patient board, I saw a discharge date of Wednesday the 10th next to Amanda’s name, where there hadn’t been one before. So, we’ll see what’s in store tomorrow. I will be on Tank duty starting tomorrow morning, since Bev and the girls are leaving. I’ll likely start staying at the house tomorrow night, too. I need to get a few things straightened up before Amanda gets home. I’m sure Tank won’t mind that. Well, maybe he has had full run of the king bed, every inch of it to himself, for quite a while, so maybe not!
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