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
Tomorrow
I got the call today that they have enough information to list me for a transplant. I will be listed at priority level 4. I had a short talk with the transplant coordinator, then went back to work. A little while later my cardiologist called and let me know a little more information and that if I start getting/feeling worse we can do some things that might help and bump me up the list (but would require staying in the hospital). A little later the nurse called back to say my insurance requires a letter of medical necessity before they will clear me to be listed, and she was sending it in (around 3pm) and asking them to prioritize it. She said that I could be listed tonight if they hear back, otherwise tomorrow morning. No call as of 9pm, so I'm going to be listed tomorrow, on my 37th birthday.
I think it finally started hitting me when I got the call. I was offered to go home, but didn't go because I didn't want to just be home by myself with nothing to do. I was definitely a bit distracted for the rest of the day. I got home and got a really good hug from Peter. We made dinner, and after I was still hungry. I wasn't feeling up for being with people, but also did not want to be alone. I asked Peter if instead of going out with his friend as planned, we could go get something I will not be allowed to have after transplant. He was very supportive and took a rain-check on his plans to be with me tonight, and we went out and shared two dozen oysters and a slice of key lime pie. I don't usually, but I decided to enjoy a glass of Moscato. We toasted to the things we will have to leave behind, and the new things to come and look forward to.
Wow. It is almost unbelievable that it has been one month since the transplant. So much has happened, with two weeks in the hospital, and ...
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