Last night we were both exhausted but not sleepy, if that makes sense. Yesterday was a roller coaster ride for sure. The care partner came in for the midnight vital check, and we were wide awake with the TV on. They had turned the lights on and off, and promptly at midnight, left them on to wax the floors again. I left a good bit out yesterday, so I’ll catch you up now. If you are catching up on the journal entries, you’d probably want to read the ” From One Extreme to the Other post before this one—spoiler alert in this one.
So, while Dr. McChicken was going over everything on his second visit, he still mentioned discharge. He wants her out of the hospital; the Nora virus is going around the hospital, so that was the top of the reasoning. We’re ok with being at home, but we didn’t come here prepared to stay out of the hospital. We were told that we were approved with he stipulation that she was too sick to stay out of the hospital. McChicken just hasn’t figured that out yet. She was up 2.5 pounds this morning from yesterday. They’ll see soon enough; I just wish he were rounding long enough to see it.
So, there is the thought in the back of my mind, still, what if they do discharge? He spoke of CarioMEMS, a device implanted in the pulmonary artery to monitor fluid retention. That would help adjust the diuretic dosage at home. That would be pointless now, she was on the max dose of Bumex IV pushes at home and still retaining fluid. So there’s not much else to adjust. Looking back, this should have been done in Texas. The thumbs-up “keep it up” doctor at St. Luke’s wanted to do that when Dr. Nair was gone for a week. Once back in the States, he nixed the idea, though.
Still, though, I had the discharge in my mind. I’m going home on Wednesday; I have to go home and work. I need to work at least 7 days to maintain my insurance. So, I’ve been thinking about how we will proceed if she is discharged. Even though I know in the back of my mind she isn’t leaving, the word discharge scares me. I asked about the exception for a status 2 listing. He said they didn’t get the necessary ammo for an exception at this time. We have the basement apartment lined up, but getting everything up here before I leave would be next to impossible. We could get a temporary place here in the university area. But, I don’t feel comfortable leaving Amanda alone up here; we may have to, but now isn’t the time. Like I said, I don’t foresee this as a problem, but I was still logistically thinking on it.
The cardiologist was fairly adamant that Amanda sit in the chair and walk a lap at least three times a day, plus do in cardiac rehab every day. He doesn’t want her to lose muscle. All of that, and she has backed off the pain meds considerably, and the fluid is coming back. So, I see that as a bad combination, but I agree she needs to move a little more. He questioned the kidneys again and lined up the renal to see us later in the day. After the whirlwind, we had a little time to process everything. We shared the good news with friends and family. And took a deep breath for a minute.
A fellow from the renal team came by. She asked if she could sit on the footrest of the bed and settled in for 20 questions. Asking about everything from personal questions to get to know Amanda, to a deep dive into Amanda’s health history. She mentioned that alone, not considering the heart, she wouldn’t be a candidate for a kidney transplant. The concern was that with the heart issues, it could affect things heavily. Every time Amanda’s been on bypass during a heart surgery, her kidneys have taken a hit and been damaged. Her eGFR (estimated glomerular filtration rate), a measure of how well the kidneys are working, has ranged from the forties to sixties for the last few months. The normal value for her age, sex, and body type is 90. A value of 10 or lower is a qualifying factor for a kidney transplant alone, without heart issues. The fellow was leaning toward thinking there was no need, but she needed the top renal doctor to weigh in. She also talked about the safety net transplant. That is where, if your kidneys fail after transplant, you go straight to the top of the kidney list. The fellow was very thorough and personable; we both liked her. She will make a great doctor with that bedside manner; I just hope she doesn’t get jaded with time and the system.
She came back with one of the top doctors from the renal team to present and review things with him. They came into the room for her to present; this is just like in the hospital shows; Amanda Simmons, age, weight, height, health history, blah blah, is here for a heart transplant and presents with high creatinine and eGFR, and the heart transplant team wants an evaluation for a kidney transplant. She did all of Amanda’s history and everything from memory, only looking at her notes for levels. I was impressed. I always like them presenting in front of us; maybe it’s because we watch so many doctor shows. We are very involved in Amanda’s healthcare, so we like to be in the know. I will even walk to the door to eavesdrop on the team as they talk before or after visits. The top doc was asking for the higher eGFR number. The fellow mentioned the sixties, but he wanted specifics. She followed up by saying it had risen to the mid-sixties a few times in the last few months. He said that may bounce her off the candidacy for a kidney transplant alone. We talked for a while, and they left with the plan to present to the entire kidney transplant team and see their thoughts. We have a slight concern about waiting due to the antibodies. If a kidney were needed, how long would the wait be with a new heart and different antibodies? I’ll delve more into that when we have a better bead on the kidney stuff.
We had decided it was time for a celebratory “you’re listed” meal, since we wouldn’t be having a ‘you got a heart” meal for a while. Steak was on the menu, Amanda’s request, and bread! We had a veggie sushi roll for lunch and nothing else, so we were hungry for an early dinner. We picked through decent steak houses and landed on Morton’s. It’d been a while since we’d eaten at one; we used to frequent one in Cleveland years ago, during our hospital trips there. I ran a few errands, grabbed a few things out of the car, picked up an Amazon package at the locker, and waited for the food to arrive. When I walked through security, surprisingly, I didn’t set the detector off and wasn’t searched. The receptionist said,” OOOO Morton’s.” I exclaimed, We’re celebrating!
I sprawled out our food on Amanda’s hospital tray, one course at a time. I’m sure not many have four-course meals in the hospital or conveniently had a steak knife stashed away, but that’s how we roll! It was a good meal, but as it has been lately, the sides were a little disappointing. I had to doctor up, no pun intended, the potatoes. The steak was good, cooked and seasoned well, yet still not the quality we expected. Every steer is different, though.
The new medication they gave Amanda is a blood pressure medication. The small dose didn’t affect her BP, but it did affect her heart rate. It was up in the 130s all night. While we were eating, the night nurse, the same as the night before, came in after shift change. She asked how the day was, and Amanda, in her typical manner, said it was good. I chimed right in, saying no, it was a horrible day that ended well. I explained the rollercoaster of a day. She was sympathetic with it, and excited for us that it ended with Amanda being listed. It was a late night, with not going to sleep till well after one in the morning.
The team was small, consisting of just a cardiologist and a PA, and arrived early this morning in casual attire. Still sporting the quintessential “I’m a doctor” smock, casual weekends, I guess. There wasn’t much new today. He still commented on how nothing was new in the room. I told him if he didn’t tell maintenance, I’d show them where our fridge was! They were confused, then realized I was talking about a fridge in the room. The PA said we have patients with fridges in their rooms. All this time, we could have had a regular fridge, and I didn’t need to sneak it in. They finally found it and were interested in its size. The doctor said I’d better watch it because the PA was an Amazon junkie and I might get him trouble with his wife. The PA was then inspecting the fridge, asking questions, and taking pictures!
I’ve been mostly going to the knock-off StarBs in the cafeteria, but a nurse a few days ago told us about a coffee bar right on the floor above us. I went that one morning, but it was closed for the weekend, along with the one in the cafeteria. So, I made the trek to get coffee from the real deal. As far as I was all the way back to the cafeteria, it was over a mile round trip to get the coveted StarBs. I went ahead and got an afternoon drink to save another walk; after all, I had a fridge to keep it in now.
Tonight was cheat night two, since we didn’t get emotional support fries yesterday! There is a burger spot that originated in Austin, which we frequent in Houston, but has since expanded to Nashville. We love their fries, so we got burgers and two different kinds of fries. It was a good walk, a little over a mile there and back. We also needed a redo on dessert from last night; they shorted us one of the desserts we ordered, and the cheesecake we got was not good. We didn’t even finish it. Just so happened that some delicious cheesecake was on the way at a pizza place where we got dessert from next to the hotel we stayed in. I made a quick trip out of it; it only took me twenty minutes to walk down, grab desserts, and pick up the burgers and fries and get back. Being a Saturday, it was busy and full of fake cowboy hats, white boots, and skirts too short! The burgers were our only meal of the day, so it was a late lunch, early dinner. It was a double-feature movie night after that, with a walk the halls, intermission. The most laps since we’ve been here, totaling three.
She did have a high rate for a while. Again, I think it’s the new medication they gave her. It’s extended release and seems to hit her later. They took Amanda off one of the pain meds and extended the other to every 12 hours. It was still a few hours before she could get the pain meds when her rate went up, and the pain followed suit. The PA had mentioned to call if she needed meds early. The night nurse, who’d just come, called and got the approval to give the pain med early. After that, it subsided, and we made our final lap of the night, in our movie intermission.
I’m taking it off tomorrow; I need to take care of a few things. So, don’t expect to hear from me till Monday night. We get a new team on Monday, so I’m sure I’ll have plenty of commentary on them!