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

Monday, March 7, 2022

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.

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