By Sunday morning, Amanda had lost 12 pounds in one day. Though we were headed in the right direction with fluid, our battle with getting a tray from the cafeteria that was right seemed to prove difficult. We waited in the morning for the transplant team to come by. The PA finally said they would be by in a bit, but they were transferring the service to the pre-transplant heart failure team. The same team, but with different doctors, he said; they still have grand rounds together and discuss all the patients together. The evening before, the night nurse had stopped the dopamine, and we wondered why. The cardiologist said he was curious and wanted to see how she would do without it. After Amanda’s output slowed to almost nothing with just the Bumex drip, she asked the nurse to tell the team about it later in the day. They promptly restarted it, and the output picked back up.
It was time for church before the team arrived, so I held off on going to the car to retrieve some tech equipment. We couldn’t screen mirror on the hospital Wi-Fi, but I had already factored that in and brought a router of my own to create a separate network off theirs. Finally, I just made a quick trip to the car and grabbed everything I needed. When I returned, Amanda was watching the early parts of the service. It took me a minute to set up my router, but by the time YJ started preaching, I had it connected to our TV. I texted YJ after service to tell him he was on the “big screen” in Nashville!
Our nurse was the same as the day before and knew of the food tray being an issue. She had called and eventually reached the manager of the cafeteria, and they got the lunch tray right, with him selecting the items. I worried the fix would only be for that meal. We had high hopes that Vanderbilt would offer better plant based choices. We have been sorely disappointed. St. Luke’s wasn’t great, but at least they had a separate veg menu and could send trays that were right. Whether it was edible was questionable! Food trays in hospitals demonstrate the significant emphasis hospitals place on food as medicine, most are junk filled with crap. I’m living proof of how a whole food, heavily plant based diet can cure and reverse diseases. Then again, many issues of why people are in the hospital are directly related to what’s on their fork. Ultimately, eating well is detrimental to hospitals’ bottom line. Most doctors have given up that people will actually follow a diet versus a pill, a shot, or a surgery, too. My doctor never mentioned that, given my high numbers, I should change my eating habits. I eventually decided that for myself. Ok, I’ll get off my soap box now.
Amanda has always been on IV pain meds in the hospital; they never swapped her to that here. They mentioned maybe trying to ease her back on things to optimize pain management after transplant. I hope they get a pain specialist on board, especially if they plan on changing her pain regimen. Speaking of pain, it was shower day. The good feeling after a shower is diminished by the added pain from all the activity. Any time Amanda needs extra output from her stiff heart, she has terrible pain.
The nurse grabbed the evening food tray from the cafeteria worker and checked it before bringing it to the room. It’s wrong again, she said, walking into the room with it. She was more aggravated than we were. She asked if we wanted anything off of it before she sent it back; she was going to make them fix it! It’s not that Amanda will eat much off of it while I’m here, but she needs a correct food tray when I’m gone. She shouldn’t have to call each and every time she wants a correct tray. What if she were gone for testing and couldn’t call to pick the correct food? I’m just not understanding why they can’t get it fixed.
We finally had somewhat of an answer when someone from the cafeteria came to take her order today; I guess they do this during the week. Amanda was very nice in mentioning our diet. I was still in bed and then popped up, saying we hadn’t received a correct tray yet. The lady said that she had noticed a note about being plant based, but stated they hadn’t changed the actual diet yet. I guess there just aren’t that many people who are plant based around all this Southern food!
Amanda was down a good bit by this morning, but still 8 pounds from her base weight. The heart failure team finally showed up. It was a real team, more like what we were used to. The Team consisted of a cardiologist, a pharmacist, two PAs, and a case manager. They were going over things that they knew, but Amanda’s medical history wasn’t entirely transferred, so we were piecing it together. I had chimed in on a few things, and the doctor asked if I had a background in medicine since I knew the correct terminology for things. No, just a background in “Amanda” medicine! He asked a few more questions, but needed the whole history. Amanda isn’t intimidated by the doctors, but when she speaks even of her own history, she is hesitant. It sometimes comes across as unsure. So I stepped in, looked at her, and asked Do you want me to go through it? I jumped right in and laid it all out for them quickly. Amanda and I are the complete opposite; even if I was unsure, I still sound like I am! I guess I laid it out well for them; the doctor joked that I should go on rounds with them!
They wanted to cover a lot after they were caught up. They questioned Amanda’s sleep medication. Worried about a better outcome, they wanted her off of it. She has had problems sleeping for years, long before the transplant. So, the plan is to wean her off of them. I don’t foresee this going well at all. The next was pain management; they didn’t speak to that much, but wanted her to see a pain specialist. The CT also showed scarring of the liver similar to cirrhosis. The cardiologist said that with the prior valve issue that could have damaged the liver, some, mentioning that right heart failure can damage the liver. They put in a consultation with the GI team. They also wanted to stop the dopamine and Bumex drip again. They mentioned going with a Bumex bolus three times a day. I quickly hopped in and said we were doing IV pushes three times a day at home and getting nowhere. They were surprised by the IV at home, and the doctor said to do four boluses a day. It will be one more mg, and the bag is run over 45 minutes, so maybe it will do a little better, but I feel we are spinning our wheels. They still don’t have her on two of the other diuretics she was on at home. So in my mind, I can’t see it working. When they stopped the dopamine yesterday, with the Bumex drip still going, her output pretty much stopped.
The most disturbing news was when they mentioned discharge. That word has been thrown around a little too much lately. The main reason we decided to come was that Amanda would be inpatient. Number one, we can’t afford to have an apartment up here and back in Houston right now. Or have one here that would be open-ended with a possible long wait prior to transplant, unless the basement apartment pans out and is cheap. Also, I don’t feel comfortable leaving Amanda here alone, and I can’t be off work solid either. We can’t expect someone to come up and fill in for me every two weeks, either. That can be done a few times, but the cost of getting someone back and forth, and the availability of people who could keep coming up here during my work weeks, would dwindle after a while if she weren’t transplanted soon. As my mother would always say, you can beat a bear with a stick for a while. Anything is doable for a while, but we can’t run through all of our backup caregivers on an extended listing wait before we might need them after transplant. I questioned them heavily on this and made it clear that we were told we were approved with the stipulation of admission till transplant. I also mentioned we didn’t move up here to be listed as an outpatient at status 4. I could tell the doctor was getting perturbed with me. The team approach is proving to be as loose as in Houston. The left hand doesn’t know what the right is doing, and vice versa. I guess I didn’t make the cardiologist too mad. When they left, he looked at me and said rounds started at 8 am, hinting I should join them!
It wasn’t long after the team before the liver guy showed up. He mentioned how they can’t get a good feel of it from just a CT scan. After going over Amanda’s history, he said there weren’t any indicators that she had cirrhosis. I questioned whether it could develop rapidly and not have been detected by previous CT scans. He said it was unlikely, but the right heart failure and all the fluid retention could have caused it. A liver biopsy was needed first to see if there was any concern at all. He’d need to run it by his attending physician, and they’d be back by later.
The nurse came in later with some iron. This is typical when Amanda loses a ton of fluid quickly. It strips her electrolytes; magnesium will be next, if I were to guess. I questioned the dosage of the Bumex bolus she came in with, just checking if it was what the team had discussed. It was, and the nurse asked what I did for work. She was wondering since I had rattled off all the questions to the team. She said I was very on top of things.
The next to come by was pain management. He said the team needed to get the story straight. If they were discharging her, then he wasn’t needed. If they were keeping her and the opioids would cause issues with the listing, then he would need to step in. If we were to be discharged to stay here, he couldn’t keep up with the prescriptions since Vanderbilt has a policy that they won’t take over any opioid prescriptions. He mentioned there could be an exception, but wasn’t sure. He was going to refer back to the team to see their plan. He returned not too long after. After speaking with the team, they said the plan was to keep us and wanted to get Amanda off opioids. The thinking is that there will be a better outcome after the transplant if she is off of them now. The pain specialist said he would ease back the medication and try new things to see what would work that isn’t an opioid. I voiced concern about backing off of them and the sleeping med at the same time. He said the pain management would occur first, then they could see about the sleeping medication.
I encouraged Amanda to send a message to the coordinator. She had mentioned the cardiologist we saw during the evaluation said Amanda was too sick to stay out of the hospital, and she would be admitted till transplant. I thought it would be good to have the coordinator confirm that and get to the bottom of the talk of discharge. She got back and said that it is still the plan, and the heart failure cardiologist we saw earlier would be back later to talk to us. The thought of getting discharged and the possibility of going back to Texas made me sick to the stomach. If we were to come back, we’d need to be in Houston. We’ve just packed up the apartment and have friends coming to help move everything back this Friday. I don’t think this will happen, but all the discharge talk had really gotten me riled up.
The cardiologist and a PA showed up later in the afternoon. The talk started off with how they wanted to get an MRI to confirm the restrictive cardiomyopathy. To get Amanda bumped up on the list, they needed ammo to prove her condition. Things just don’t add up to the team, and as with a lot of Amandas heart history, it is confusing and unconventional. They just want to confirm things for themselves. The same goes for the pain; it doesn’t make sense that she’s having it. We got this before with some other heart issues. It seems Amanda is more sensitive to chest pain than most. The cardiologist also wanted her to exercise since the wait might be a while; they didn’t want her to lose muscle. I voiced concern that exercising, which causes pain, and lowering the pain meds was a bad combination and a delicate balance. He said well, we’ll balance it then, but they will soon find out this is a bad idea. Amanda is exercise intolerant right now, she can’t even walk at a normal speed with out having pain and getting short of breath. I’ll be interested in seeing what the pain specialist has to say.
Another PA came by later; she had been working on Amanda’s case. We seemed to have been keeping her busy after her rounding. The top question was from IR, where they would do the liver biopsy. Lying flat is difficult, but Amanda said she would brave it. I had a few other questions, none of which she could answer. I was asking questions above her pay grade and outside her lane.
Interventional radiology was the next to come by; they’ll be doing the biopsy. To access the liver, they will go through the neck via the jugular and then through the heart. I was locked and loaded to question this approach; it’s one thing I asked the PA about. Amanda beat me to it, though. With all the reconstruction done during Amanda’s transplant, Dr. Nair was very shy about going through the jugular for anything, and he never did. The IR doc said Texas did a good job with the reconstruction. However, the area above the SVC, the vein that drains blood from the upper extremities to the heart, was slightly narrowed. If too narrow, they would balloon the restriction to open it up a bit to gain access. Doing that on a part of the vein that had been sewn back together didn’t seem like a great idea to me, so I questioned that approach. It seemed that going through the femoral artery in the leg was a much harder approach. I actually thought they were done percutaneously, through the skin in the abdomen, to get a biopsy. The biopsy is scheduled for tomorrow, but it could be bumped for a higher-priority case.
It’s been a crazy day full of ups and downs. There’s been so much going on throughout the day. I had feared we’d need to go through things like this and “prove” everything. I’d say it feels like we’re starting over, but that’s precisely what we are doing. Not our first time, but it has been a while since we started over at a new hospital. It’s not just the hospital, but starting over with each doctor every time we see a new one. Especially when transitioning from the post-transplant team to the pre-transplant team. Like I mentioned, the team approach leaves a lot to be desired.
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