The same but different

It has been a weird 48 hours, that for sure. Thursday, I had a really busy day. I did a little work, had lunch, did another hour + of work, then did a 20 minute bike ride to get in my exercise. Got in another hour of work, then sat down to rest for a little. I then worked 5:15 to 7:40ish, as we had our first online ATLAS meeting of the year with the teens. It was awesome, but I needed a soda for the caffeine to get through the meeting, and by the end of the call I was shaky and starting to feel cold.

I curled up on the couch with Peter and a blanket, and we watched an episode of the Great British Baking show. By the time I was ready to go to bed, my temperature was 99.9. I was concerned, but assumed it was due to pushing it too hard during the day.

Overnight I kept having the weirdest dreams. I have been reading the Outlander books by Diana Gabaldon - I had previously read the first 3, and found a deal on the series, so I bought the set of 8. I watched the first season on Starz when it first came out, and want to watch the rest that are out, but also wanted to have read through first. So in my dreams, it was a weird amalgam of me being in the midst of Outlander wars with pieces of wisdom and food from the Great British baking show. It makes no sense, and didn't in the dream itself either. Throughout the dream, I kept having to get up to go to the bathroom. As you can guess, after getting up around 9 times plus not really getting any sleep, plus having a fever creep up on me, I was not feeling good. Peter got me to the couch where I was able to have some water and about an 1/8 of a plain bagel, and an applesauce package, but I was in that weird place where you feel hungry and nauseous because you're too hungry all at the same time.

Peter called the cardiac transplant team, and as he did I just curled up with the blanket feeling worse and worse. I was really shaky on my feet, and needed Peter to walk with me because I was worried about falling. When we were told it was time to go to the Emergency Department, at that point my temperature was at 104 and part of me was glad they said I needed to come in. Even just walking to the bathroom was exhausting given how tired and worn out I was. I realized that I should shower before we left as that is often a luxury you don't get while admitted. The problem was I so cold I didn't want to get out of my blanket, let alone clothes. Peter got the hot water going and helped me to minimize air exposure after, and I'm grateful much he helped. By the time we walked to the car I felt ready to pass out and just sleep. Instead, I worked on another 1/8 of the bagel and drinking more water.

This was my first time being at the Duke ED, and I was fairly impressed. They screened us coming in, and when Peter dropped me off the gave me a wheelchair and pushed me in while he parked the car. I was registered in minutes, and then it was a short wait before they took me and Peter into the triage room. They got the info, did the covid swab, and the sent Peter back to the waiting room until the results came back. We got them in 20 minutes (which is incredible), and it was negative. First thing they put in an IV to take blood for cultures, and then started me on IV fluids and broad spectrum antibiotics in case of infection. They also gave me tylenol, which helped a little with feeling really cold. As time went on, they noticed that my blood pressure was really low, in an almost dangerous range. They moved me to a room "where there are fewer nurses per patient" so they could keep a closer eye on me, but when we got there the sign said 'resuscitation room'. That scared me a bit, as those rooms are often meant for people they think might crash or where they might have to do some procedures, like put in major lines/etc.

As they gave me more fluid my blood pressure slowly started to go up. They wanted another IV in, and it took them until the 5th try for them to get one, and that one didn't last long. Luckily they were able to get me the fluid I needed quick enough, so I didn't need a central line, which would have meant going to the ICU afterwards. As I stabilized some and got cleared for the regular hospital cardiac floors, I was already feeling a lot better just having gotten sleep and not being so dehydrated. They gave me a heated up ham and cheese sandwich, some milk, and some peanut butter and graham crackers before we left the ED, and by that point I actually had an appetite. Sure enough once I started eating and drinking the diarrhea came back, but since they had to test everything that was a good thing.

We got to the hospital around 10:30, and it was just before 7pm when they wheeled me up to the floor. I was put on the 7300 wing, which is the floor I stayed on for a week before getting my transplant. We got situated and the nurse got my initial info, then it was shift change. To my surprise, my night nurse was one of my nurses from the 3rd floor who I had after transplant. It was nice to see a familiar face. Then I met my NA, and she was working on this floor pre-transplant and had worked with me multiple nights. Peter stuck around until the cardiology team came around, then headed home - by then it was just about 9pm, which is when visitors have to leave by. We are both just really, really grateful that he is allowed to be here. I don't know what I'd do if I had to be in here alone again. I know that I would have to deal, but the idea of it makes me sick.

I got my night meds minus the blood pressure ones (since my bp was still lowish), and the fever had come back to 102, so they gave me tylenol again. I was able to get to sleep a little after 10:30, and they only woke me up a few times to get vitals and start meds. When I woke up in the morning, I felt fairly rested, which was nice. I was wondering what I would get for breakfast, as I had not had a chance to order the night before. I was somewhat surprised when breakfast came and I was on a liquid diet - which meant I had a bowl of chicken broth, hot tea, apple juice, and both a lemon and cherry fruit ice. That was a first for me. They have someone from nutrition come in to take your order for the next 3 meals, and the options of a liquid diet are limited, as you can guess. I had a choice of apple juice, cranberry juice, milk, coffee, or tea to drink, veggie, chicken, or beef broth for my entree, and lemon or cherry fruit ice as a sweet. I had to choose my next three meals, so I mixed it up and ordered beef broth for one of them. Needless to say, I was not looking forward to the upcoming meals. Don't get me wrong, breakfast today was easy on my stomach and not bad, but it didn't really make me feel full.
I was waiting for the transplant team to come round on me with OT/PT showed up. By this point I was getting a bit antsy. My temperature was normal so I was doing ok. They talked to me about what I've been doing at home and seemed pretty impressed (which is funny, because I've been frustrated its not enough). We went to take a walk around the hall, and when we opened the door the doctor was outside. She looked really surprised to see me and said, "I didn't expect you would be feeling well enough to be walking yet." She listened to my heart and we chatted in the hall briefly, but basically nothing has come back positive yet. It could be rejection, but given the sudden onset they expect its more likely some kind of infection, they just aren't sure what. They are holding my bp meds for the time being, and also holding some of my anti rejection meds that can cause diarrhea - and are thinking about looking into a couple alternative meds going forward. The doctor then said they could change me back to a regular diet if I felt like I could eat, to which I said yes. She then told me to go walk, and we started. The OT talked about how fast I was going, and I got a good chuckle at that, as I'm still not up to my normal speed but can remember how long a lap used to take me. We did two laps, and that was enough to tire me out some so I sat down and read for awhile. I called down to put in a non-liquid lunch and dinner order. They had not changed it in the system yet - but they said as long as they did and I could get it in before noon, I was good. The nurse paged the doctor at 11:30, then again at 11:45. At 11:55 I got the clearance and called in my order. Real food! While I was finishing up, Peter arrived to spent time with me for the remainder of the day. I was still having GI issues in the morning, but not after lunch, which I think is good. They needed more samples, which I'm guessing means they still aren't sure what it is (although we know it isn't quite a few things).

It was a quiet day of reading, Peter and I played a game together, had dinner, and just enjoyed being happy to be able to be with each other. We realized that the game Peter grabbed, Elder Sign (HIGHLY RECOMMEND), we last played when I was on this same floor waiting for transplant. I also had a moment today where the door was open and one of the staff walked by and saw me, stopped, and remembered I was here before. In some ways lots of things are same, but also different. Last time we were scared and nervous but hopeful about transplant. We didn't know what was happening with covid, and weren't sure what they would do about visitors. I was not doing well and getting worse and worse. This time, we are still scared and nervous, but about why I got the fever. We still don't know what is happening with covid, but at least we know Peter can be here from 1pm-9pm every day. And I seem to be getting better.

Here's hoping we have more clarity tomorrow. It sounds weird, but I'd like them to find whatever the infection is so we can specifically treat it and I can know.

Good night all. Please stay safe. Wear your mask! The hospital has a new policy that even when inpatient, when staff comes in your room you, the patient and your visitor, have to wear a mask too (the staff have them on all the time). It makes sense, and I'd much rather do that and be allowed a visitor than not.