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

Tuesday, April 6, 2021

Home sweet home

Today is the one year anniversary of my coming home from the hospital. At the time. I was over the moon happy to get out of the hospital and see Peter. It never crossed my mind that a year later I would mostly only be home with Peter.

While it’s been an incredible year in some ways, it also feels anticlimactic. I don’t know exactly where I thought I’d be a year later, but stuck at home in the middle of a pandemic was nowhere on the list. So many of the ways I thought I would measure my progress, like being able to do normal tasks easier, I haven’t been able to measure since I’m home instead of going out to work and other normal things.

In 2008, a year after my valve replacement, we had a party where my friends and I rented out a bounce house facility that also had sumo suits. It was, as Mickey called, my “yay, Jodie’s not dead” party. I guess I figured there would be some celebration to mark one year this time. We had initially talked with Liz and Brad about going to Europe for a week to celebrate after transplant. And because of covid, it got in the way. That’s not saying we can’t celebrate Big next year, but it just doesn’t feel as momentous.

I got my COVID antibody test results back, and it’s negative. The test is too new to know what that means - is it because it was so long after the vaccine? Did my immune system not respond at all? Peter had his dose 2 yesterday, which makes me even more disappointed in my results. We were planning to expand our social circle a little, and now it’s unclear if we do that, even with vaccinated people, if it’s safe. 

This doesn’t mean I’m not grateful for everything that has happened. I had no rejection in my biopsy and my vessels looked great. I just wish things could start going more back to normal for me. With this result, I’m questioning if I should make any changes and if I can do more.

I hope you all are able to get your vaccine soon. And I look forward to when I won’t have to always wear a mask around others.


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