Happy Heartiversary = Adventure

 What a day.  I started with my normal swim at the gym.  I was running a little late so I only did 8 laps (400 meters) this morning, but I figured that since we were hiking later that was ok. On the way out of the gym I headed to a local coffee shop & croissant place. They have amazing sweet croissants, so I got myself a chai tea latte and a croissant with cinammon flavored whip cream and fresh strawberries, while I got Peter a fancy coffee and a vanilla cream (custardy) croissant.  They were delicious and a great start to the day.  I also grabbed a baguette for the road.

After getting home, Peter and I looked up a bunch of trails and decided on one at Fort Macon, about 3 hours away on the coast. We have never been to the NC coast before and it is a 3.3 mile hike, so it met our criteria. We quickly got together water, rain jackets (just in case), a few snacks, and then grabbed the puppy and got on the road. 

During our drive, I asked Peter to share what he remembered from two years ago. It is interesting that how we remember things, and the level of detail is so different, but it makes sense with how our minds work. For some reason it was comforting to hear it, and Peter has all the notes he took everytime he talked to a nurse when I was inpatient those two weeks, which I may look over again later. We also took the time to just talk, about anything and everything, and it was really nice to have the uninterrupted time to just connect.

We had a good drive out, and then we arrived at Fort Macon. We scoped out  the trail, which is a 3.3 mile loop. Part of the trail is in a cool tree area, and the rest in amidst the sand dunes with the sound of the ocean not too far away. It was definitely a new experience in terms of terrain and sights. 

The hike went well, except when we realized at about the 2.8 mile mark that my phone was no longer in my pocket. Peter and Bosun ran back up the trail, and it turns out a nice couple had found it at mile 2.1 (where we had stopped to give Bosun some water) and were bringing it to the visitor center. We got it back, and it added about .2 miles to my hike and .5 to Peter's. I figured it was appropriate to take a photo at the last mile marker, 3.2, to show that I had done it all. 

At the end, we went to the car to get more water, then decided to go walk on the beach. We realized it was Bo's first time on a sand beach, and that neither of us goes to sand beaches much. We had a nice time walking on the wet sand, and eventually realized we should go get food and head home before the storm that was expected came in.  We stopped at a caribean seafood restaurant and got a quick bite to eat. The nice part of being in a tourist place on the off season, plus on a random wednesday, is that it was not busy. Bosun was captivated by the people playing beach volleyball near the restaurant, and afterwards had to investigate before we made our way home. 

All in all, I think this was a fantastic way to celebrate my heartiversary. I did two physical things that my old heart would not have been able to handle two years ago (swimming plus hiking), we also explored a new part of North Carolina, and we got to spend time together. Now, I'm exhausted and will turn in early so I can make my 6:55am swim tomorrow morning. I know I probably won't be able to take this day off every year, but it seemed right to do it this year. Peter, Liz, Brad and I had talked about how, on my 1 year heartiversary, we were going to take an international trip.  Obviously that didn't happen, mostly due to covid.  Maybe next year we will finally be able to do that. 

I am too tired tonight, but tomorrow I am going to write a letter to the donor family with an update. They didn't respond to the first one, and I don't expect them to respond now, but I do want them to know what good the gift their loved one gave has enabled to happen. I'm hoping it can bring them some comfort to know that heart is beating strong, being taken care of, and is changing my life for the better. 

2 years eve

Two years ago tonight (by the time you read this, yesterday) was one of the worst nights sleep I have ever gotten. In the week after I had been out of the ICU and back on the floor and on the transplant list, things kept getting harder. We kept things upbeat, but both Peter and I were really scared. I was physically feeling a lot worse and leaving the hospital was not an option anymore until I got a new heart. Due to covid and all the unknowns, the visitor restrictions kept getting more strict. My dad and Lupe had went back to Chicago since only one person was allowed a day, and it was becoming clear that I couldn't let anyone come back after transplant because of covid. 

The worst part was that I knew they were putting a total visitor ban in place the next day. Peter had been my rock through all of this, even if it was just him coming and doing work in my hospital room, it helped me to feel like myself. I had been trying to figure out how I would deal with with them telling me they found a heart and be in the hospital alone without him. Luckily (in some ways), that evening they told me that they found a heart and the surgery would happen the next day. 

Guys, I lost it. I was both hopeful but also terrified. Waking up from the dry run was one of the most devastating moments of my life, and I knew that I could not do that alone. We started asking how we could make sure that Peter could stay until he at least knew that it was not a dry run. I couldn't sleep. I was so worked up I gave myself a fever, which was problematic as they wouldn't do the transplant if I had a fever. Peter had to get in the bed and curl up with me for me to calm down enough, crying myself to sleep in his arms. 

The nurses saw what was happening and decided they would break protocol by letting him leave my things in the room on the floor, so he would have to go back there.  The plan was that, if needed, he could go back to that room if there was a dry run and they were going to find a way for me to see him when I woke up. 

We got up really early after pretty much no sleep, but at least were still together. Peter stayed with me as we were waiting for them to get me to take me to the OR, and it was eerily quiet, with almost no staff, as all elective surgeries and most non-emergency surgeries had been canceled. We quietly talked, the held hands, we tried not to cry too much. It was such a different place from where I was 2 weeks prior before the dry run. At that point I was hopeful and excited and could not wait to get in there. Given everything that had happened in the previous two weeks, I was a mess. I was hopeful, but also remember just pryaing over and over that it would not be a dry run again. I also kept trying not to think about being alone when I woke up, and knowing that either way, if I got the new heart or had to wait longer, I was going to be on my own in the hospital for a long period of time. That it would be the first time in my entire 37 years that I would ever not have anyone with me in the hospital for more than a day. We didn't even post anything on social media until we were sure it was happening because we were worried we would jinx it, and knew that neither of us had the emotional energy to deal with it if that happened. 

I'm glad I can look back and see that it did work out, but that night I didn't know what was going to happen and I can't even describe what that was like. The juxtaposition to this year is stark.  Tonight, we went to our intro to agility class with Bosun, and I was running around with him outside. Still wearing a mask to be extra careful, but being able to run without getting winded. 

I'm not sure why things are hitting me harder this year. Maybe I'm just further out from everything, so I can actually process things more. I decided a few weeks ago that I was going to take off my 2nd heartiversary. Peter got the ok to take off too, and tomorrow we are going to go on an adventure. I'm not sure exactly what it will be, but we know we are going to do things I couldn't two years ago, like take a big hike, and we are going to explore somewhere in NC we haven't yet. 

They say that you can't really appreciate the good unless you have the bad to compare it to. While some of the time I wish the bad had not had to happen, it definitely makes the good now even sweeter. I'm excited to see what the next year brings. My 2 year check-up in on April 5th, which just happens to be the 2 year anniversary (I think, or off by 1 day) of when I was discharged and got to go home from the hospital. 

I will probably keep posting about those two weeks after and give you all an update once I have my 2 year appointment. And then, after that, I will most likely move the focus to fulling step 7, which is to  live a long and happy life. 

Covid isolation

 Before you worry too much, no, I don't have covid, and no, I was not exposed.  Two years ago, due to having a fever and issues with keeping my oxygen up, I was one of the first Duke patients to go into covid isolation despite my team not thinking I had it. Now that I'm not out of it, and can look  back, that was a crazy time. 

Growing up, I loved the book "the hot zone" and watched the movie, fascinated with the isolation and how the researchers and doctors had to suit up to go in. I thought I would want to study viruses because it was so cool. Later, after I started actually working with bacteria, I realized that was more my interest.  But learning in grad school the info about how infections happen, how they spread, and how to protect yourself, I remember feeling really safe at Duke.  I wasn't happy to go into covid isolation, and they did not handle it in the best way, but I remember thinking that even though I did not have covid, I felt safer to know that if anyone else in the hospital did, they would also be isolated. 

Granted, the intrigue at the process, watching the nurse and doctors gowning up in the negative pressure room, feeling like I was in a fishbowl, did get old after not too long. I was really lucky to actually work at the hospital and have friends who also knew the rules, so we could figure out a way to get me phone numbers so I wouldn't be so bored. 

I was also really worried about not being on the transplant list and what that would mean overall for the timing, and was itching to get to see Peter again. I don't think we told you how it went for us to get out of isolation. 

I went in on a wednesday afternoon that I was moved up to the ICU for isolation, and I think the team scared my dad and Peter as there were all of a sudden a bunch of people in the hallway outside my door, including people in suits (which means adminstrators).  As the morning progressed, they kept putting different contact precautions on my door, and even made dad and Peter put on masks (and maybe gowns, I can't remember)

Then they told us about going upstairs, but it was pretty hush hush.  They gave Peter the bags, including the one that was supposed to come with me with my phone, and walked me to the ICU.  It was so quiet, since I was mostly alone in the room. I luckily started feeling better Thursday and Friday.  On Friday we got the news that even though I was feeling better, I needed a negative covid test. The state lab could not run my sample, so they sent it somewhere else.  On saturday in the early evening, we were told we would get the results. As soon as the negative result came in, Peter immediately drove over.  The nurse had opened my isolation doors and I was expecting to be moved that night. 

Peter got to my room, and a few minutes later the nurse came to let me know that there was some grumbilng because my test was a "presumptive negative" since it was not an fda approved test, and some of hte doctors wanted to put me back in isolation until I had an approved negative result. Mind you, I don't think there really were fda approved tests at that point, and if there were they were few and far between. I decided that I was done with being cooperative, and I called my heart failure doc on his cell phone to tell him the situation. He let me know he would handle it.  

The transplant team was able to talk them down, and we were told that since it was so late (after 10 at this point), that Peter could stay over and we would be moved on Sunday morning. Looking back, I can see the humor in some of this, but it was definitely not as humorous at the time. 

I'm thankful that this happened right at the beginning, before there started being a bunch of actual covid cases at the hospital. Hopefully they were able to learn some things in terms of gettting in and out of the rooms. I never thought that 2 years later, there would still be patients with covid in the ICU's or us having to worry about going into covid isolation or quarantine. It's definitely been an eventful two years!

2 years ago the world stopped

 I know it's been a long time since I last posted.  Almost a year.  A lot has happened in that time, and it also seems like nothing much has happened. Since about Valentine's day, I've been feeling contemplative.  I think that after my 2 year heartiversary I may retire the blog to "live a long happy life" (at least related to heart stuff, maybe at some point I'll decide to blog about something else), so I wanted to give some updates now.

Over the past month or so, I have been re-reading the blog and thinking about 2 years ago. On my birthday last week, it really hit me that two years ago, I had just been listed, and we had no idea what was going to happen. This last week I've had a the memories of 2 years ago going through my mind in the background.  Yesterday two years ago (based on day of the week), I got the call that they had a heart and went into the hospital so they could have me ready for the morning. We were so excited... nervous, but overall excited and hopeful. 

Of course, now I know that it was going to be a dry run. Waking up without having a new heart was one of the most traumatic things I've ever experienced. It still hits me hard, and at the same time I believe the doctor did the right thing not giving me that heart. From my personal experience and in my work, these last two years have really made me realize how traumatic life can be, and that sometimes what you need to help you can hurt. 

This is also the day, 2 years ago, that Duke closed their outpatient clinics because no one knew what was going on with covid. So in a lot of ways, it is the 2 year anniversary of when the world stopped (at least for awhile). Part of me can't believe that we are still dealing with Covid and the extent to which this became a problem. The other part of me is still really uncomfortable with the idea that this is just going to be the new "normal." I'm still now totally sure how many of these cautionary measures I'm going to need to continue into the future considering my continued immunosuppression.

It seems appropos that this evening, I made a presentation about how to modify traditional in-person programming to virtual settings. I can't stop myself from thinking about how things would have been different if my transplant didn't happen in the middle of a pandemic.

Thank you for your continued support as I continue to grow stronger. I do keep seeing gains, even if they are smaller than they were at first, and it's definitely been cool to realize things I never knew - like that being out in the cold does not mean that I have to be freezing, that I don't always have cold feet, and other little experiences that a fully functioning heart has given me. It has certainly been a wild ride.