What I remember

Hello everyone. I'm finally feeling well enough and have access to my phone enough to post. I'm going to try to catch you up on what I remember since my last post Monday. Peter has done a great job keeping up.

On Monday they took me back to the OR. As they wheeled me in, my eyes kept filling with tears - of relief, joy, nerves, trepidation. I kept reminding myself it could still be a dry run, but was getting excited. They got me in, moved me over to the surgery table (which was surprisingly warm) and then started to get stuff ready. It was like a well oiled machine. Someone asked what kind of music I wanted to listen to, and I went with jazz. They used Miles Davis as a start. This led to questions about why jazz, and next I'm talking about swing dancing. The surgeon comes in and tells he will get me swing dancing again. He says things are taking longer at the donor hospital but so far everything looks good. It's taking awhile, so we keep up small talk as they prep and get me ready. Apparently I was rolled back at the same time as the donor. It takes awhile to get the arterial line, but it goes in. Eventually the surgeon returns and says we are about good to go. I ask everyone else in the room to remind him to get me video/photos of the hearts. We then get word that heart is on its way. I asked the surgeon if this could still be a dry run, and he said yes but had a really good feeling about the heart. As they pushed the anesthesia I looked at the clock and it was 11:28am. Then it was like I was seeing a cracked screen and hearing noises like in an old school arcade/pin ball game, and I was out.

3:40- I'm disoriented and my eyes flutter open. My neck really hurts and my throat is sore. But my chest doesn't hurt. My eye catches the clock, which says 3:40pm. Even though I'm not all there, I know I didn't get the heart. Im slightly start to panic inside, and ask what happened. They tell me that the heart was not as good as they thought so they couldn't use it. Initially I was upset and angry and yelled to God "why would you do this". As I slowly woke, I prayed and remembered pastor Cheryl's sermon on how God is trustworthy. I tried to show that trust, and the chorus from a song we sang in church on Sunday came to me, over and over. The lyrics are "you have called me higher, you have called me deeper, and I'll go where you will lead me Lord". This really helped me to calm down as there was still a lot of chaos in the room.

I heard Peter, and he was there. He held my hand and I calmed some more. I think his mom Patty was there too, but it's fuzzy. The surgeon came in and talked to us - they had the heart and basically the longer it was on the box, the worse and worse it was looking. The readings weren't great, and they were concerned it might not work great so they decided not to use it. However, since it was in the room and a last minute decision, I was already intubated, had a central line, and was on heavy meds (which they nickname jet fuel). 

I slowly became more coherent over the next hours. I was in the cardiothoracic intensive Care unit, or CTICU. They would keep me overnight to wean me slowly off the medicines and transfer me to the floor the next day. 

I felt pretty awful physically and was really sad about not having a new heart, but I was encouraged that they are so selective and trust their choice. My dad and stepmom arrived just before the end of visiting hours and had a short visit before they left.

I think I started running a fever sometime overnight. But in the morning (Tuesday)  I woke up feeling slightly better, so the nurse took me for a short walk down the hall. After that it seemed like it was harder to keep my oxygen levels up and they put me on supplemental oxygen. They removed the arterial line and I was transferred to the floor.

Peter was with me most of the day, with my dad, stepmom, and in-laws coming in and out. This day was tough, as I was tired and it really felt like work to breathe and talk. I don't remember much, but the surgeon came and explained that he would have used the heart if I were 65, but for someone my age it was not good enough, and he wants a really good heart for me. Through out the day I still didn't feel good, and they said if I didn't get better they would be sending me back to the cardiac ICU.

Wednesday morning both Peter and my dad got there early. It was still really hard to breathe. My fever was getting better, but all my cultures and tests had come back negative so far (cultures often take 2-5 days to grow). Normally they would have moved me to the CICU, but given what is going on with covid, they decide I should go to the general ICU and be on isolation until I got a negative covid test to be safe. (I do not/did not have covid) My cardiologist came in and says he knows that I'm a bit if a guinea pig as they are figuring out the best way to deal with potential covid cases, but they wanted to be sure.Peter and Dad had to get my things, but put them in clean bags as they left the room, and had to leave the hospital. Unfortunately, they had not thought through cell phones at that time, and mine went in the bag with Peter home, with him not allowed to come back until I have a negative result.

Some of you may think this was a severe response. For those of you who have known me at least 13 years, you know I have a master's in pathobiology, or pathogen biology. Duke was following the standard for isolation and even though my team thought it was a very low risk, I do think it was the right call. 

The staff moved me very efficiently and this ICU has negative pressure doors. That means there are two sets of big sliding doors. The area in the middle has negative pressure so it is blowing the air into the room, not the hall. The staff have to put on full protective gear, including booties, gloves, gowns, n95 respirators and a plastic face shield. The nurse has a nursing assistant who is watching like a hawk to make sure they do the right order coming in and out. This is how they keep caring for me but not exposing anyone else. They did the swab for covid and were told to send it to the state lab. All day Wednesday, as we started to get rid of fluid, I felt a little better. I was able to call Peter since I have a room phone, and got my dad and mom's numbers. It is amazing to me how I know so few phone numbers -and scary.

Thursday I stopped running a fever and felt a little better. We continued to give me medicine to get rid of excess fluid, so I was peeing all day. The afternoon nurse told me about what Peter called "the amazing pee thing", which is what I probably called it. It's called a prima -fit, and my Dr friends, you need to know about this. It is roughly shaped like a pad but cylindrical, and is sightly rigid so bends to fit around you. It is connected to suction, and has a tube running to a collection bucket. So basically, you can pee and it just collects and wicks away from you. It's amazing. They thought I was really fluid over loaded and that is why my breathing is so bad, so today during the day I peed out over 2 liters, and overnight over 2.5 liters more. This meant I actually got some real, uninterrupted sleep.
I'm going to leave you at Friday morning and update more tomorrow. I've loved seeing your messages and feel so loved.