BACKGROUND

As many of you know, Jodie was born with congenital heart defects and had surgery at 10 days and 18 months old. She did ok throughout childhood, but had to be on some medications through high school, then another was added in college. Jodie went on to grad school, and unexpectedly required a valve replacement in 2007. It turned out she was in the early stages of heart failure, but only found out after the procedure. She needed to get a pacemaker since her heart stopped beating on its own, and then a few months later upgraded to a pacemaker/ defibrillator due to low heart function. In 2008, Jodie was told that she would eventually need a heart transplant, and that the doctor predicted it to be necessary within the next 5 years.

In the 12+ years since then, Jodie was upgraded to a bi-ventricular pacemaker/defibrillator which helped her feel better but didn't improve her numbers, had it replaced two more times due to the battery almost running out (normal process), was put on a new medication that helped her feel much better but still didn't improve the numbers. Then in April of 2019 things started to get interesting. Jodie went into an atrial flutter and after 3 weeks, had to be cardioverted (think being shocked with paddles, but more controlled and while under anesthesia) to get her rhythm back to normal. Then over the summer she started feeling more and more tired, and having slightly worse symptoms. Jodie had some tests in August that showed things were worse, and the doctor told us in October that we would need to check back in early 2020 to see how things are. After having those tests, its clear that Jodie needs to have a heart transplant.


WHY DID WE START THIS BLOG?

Jodie and Peter decided to keep this blog for a few reasons. First, as a way to keep our friends and family up to date. Second, as a way to share how we are doing and what we are going through (and potentially what we need). Third, as a way to document this journey.

We have learned that we want the people around us, and those who care about us, to know what is going on, but don't always have the energy to talk about it over and over. We will be sharing was is "on our hearts" as we go through this journey. We welcome you to check in as often as you like. Thoughts and prayers are much appreciated. You are always welcome to reach out individually, but please feel free to leave comments on our posts and we will try to respond to everyone when we can. We are also planning to use this platform to share news when we don't have time or energy to send to everyone.

Some of our posts may be more emotional, and some may be about more mundane things. Once we get to step 4, it could take anywhere between 1 day and a year or more to reach step 5. We have no way to know. As we are in that waiting period, we do know that one of the things that will be helpful to us will be to keep busy - board game nights, movies, etc. If you are nearby, please do reach out. While Jodie can't be doing anything too strenuous right now, we still want to connect with people. If things come up that we need or could use help on, we may post it here, or reach out specifically to those who have let us know they want to help.

Thank you for walking with us through this journey as we share what is on our hearts. Please check back for updates. We will add information as it becomes available and as we go through the process ahead.

God bless,
Jodie & Peter Elliott

Wednesday, March 23, 2022

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. 




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