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

Friday, February 28, 2020

And the beat goes on

I turn 37 today. This morning, around 10am, I got the call that I am officially on the transplant list. With everything going on, it's made me fairly contemplative about my heart. I've vacillated between being frustrated/upset/angry that my heart is only going to last 37 years, and being in awe of the fact that it has lasted 37 years.

When I was born, my heart had a Shone's complex. We found out when I turned blue at 8 days old. This condition is made up of 4 separate congenital heart defects. My parents were given a 4% chance the experimental surgery would work, and they took it. A year and a half later, they had that same choice - 4% chance I could grow up. My heart has never been whole - but it's kept beating. Despite early surgeries, it gave me a fairly normal childhood. I danced, played, cheerled, swam, and mostly kept up with my brothers. It needed some help with medications in high school and college, but I graduated, was over involved, and I lived out my hopes and goals.

At 23 I went into heart failure after a valve replacement that I thought would make things better. Then my heart stopped beating on its own. But a pacemaker (then pacemaker/defibrillator) and lots of meds allowed me to finish grad school - at least my masters - and work. I was tired, but I could still do some dancing, and I was able to work full time. Despite being told in 2008 that I would probably need a transplant in the next five years, it's lasted until 2020. In that time I moved from WA to RI, landed my first full time job, got Stella, met Peter, got a master's in social work and two licensures, got married, moved to NC, bought a house, and had countless memories made. 

So really, I'm in awe. My heart was broken to start with, fixed in new ways they weren't sure would work, and yet has given me a full, happy life thus far. Yes, I can’t remember the last time I just had energy and didn't have to worry about using it up, but I knew there was a time I did. I've been able to work and live my life, albeit at a slower pace, and in a lot of ways it's made me a better person. Just today, I was able to travel to Ohio to meet our new nephew Mason. Granted, I needed a wheelchair to meet me at the gate because the walk was too far, and I had to sit down to cuddle the baby, but I still was able to make it.

So while part of me hates that my heart can't stay with me, I also can't help being grateful for how far it's gotten me and all I've been able to experience and accomplish with this little heart that has had the odds stacked against it from the start. Despite only working at 25% since 2007, it's gotten me here in relative health. I appreciate all it's allowed me to do and that it keeps performing against the odds. While I'm looking forward to my next heart being healthier, I hope it has the same work ethic as my current one.



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