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

Thursday, July 21, 2022

Rolling with the (proverbial) punches

I woke up Wednesday after 6 hours of uninterrupted sleep, but I felt exhausted. For the first time since I've been in at Duke, I did not get up and get ready in the morning.  I stayed in bed and had breakfast on my tray, and waited for the team to come in.  They let me know that my clotting factors were too low to do the plasmapheresis today.  I ended up taking a nap at 10:30am and not really waking up until after 2pm. I felt a little more awake but was still really tired. I was given Lasix again and that helped to get off my water weight, which helped my breathing. My dad arrived in Durham and came over in the afternoon.  We had a nice visit, played a board game, and watched a few episodes of a show. 

I was really hoping for a good nights sleep. I had just gotten to bed when they did 11pm vitals.  Then around 12:30 they needed to draw blood for labs. Not a problem usually - except my PICC line would not pull blood off like it should have. The nurse said they would call the PICC team and the lab team, and whoever got here first would do it. I was tired and completely lost it - I'm not even sure why, but I was sobbing uncontrollably because it was just one more thing that was not going right.  It took over an hour and 3 people, but they finally did figure it out and got the labs drawn. By that point it was almost 2am and I was wide awake. I went to sit in the chair, read a book, and just tried to calm down.  Around 4 I was about to try to sleep again when my telemetry box started to beep that it was out of battery. The nurse changed it and got my vitals, and I decided to try to sleep. 

I woke up this morning a little after 8 and was groggy.  I was told that the pharesis folks were coming today, that I would need to get a cryo treatment that gives me back clotting factors, and that I would need IVIG after that. Dad came over fairly early and we hung out as I waited for things to get started. Pharesis did not start until after noon, and it went well. At the end my heart rate was down to 110, which is an improvement. A little while later the team NP let me know that would be my last plasmapheresis and they could take out my neck line (the vascular catheter mentioned a couple posts ago).  Great, right?  Well, instead I just started crying and really confused the team. As I have experience as a therapist, I realized that I was having a trauma response based on my time in the hospital after transplant where it really hurt every time a line came out, and I had to do it all alone. I explained that to the team as best I could, they got me an anti-anxiety med, and Peter rushed over so he could hold my hand. Trauma is weird, because while I logically knew that what was actually happening was a good thing, my body was remembering all the bad feelings from two years ago and making me really emotional. Once we got started it went really quickly to take out the line.

I've had dinner, finished my cryo treatments, and now just am waiting to get my IVIG treatment, which will give my body broad antibodies.  This also tricks my immune system into feeling secure and like it doesn't have to make more right away, which should give time for my immune system to forget it was making the antibody that caused the rejection against my donor heart. The plan is start that tonight around 9pm, and as long as everything goes smoothly, I can go home in the morning.  The doctor is hoping that I will see a good change in my heart rate going back to normal within in the next week or so, and I'll come back on August 1st for follow up tests to see where everything is.  

I'll be excited to be home for more than 12 hours and get to sleep in my own bed. I also miss the pets.  So, today was a long day, and it started a little dicey.  I think that the (proverbial) punches had more to do with my being tired, emotionally labile (thanks high doses of steriods!) and having unexpected trauma responses that aren't based on logic.  Here's hoping I get a good night's sleep, everything goes well overnight, and we can finally go home in the morning after rounds!

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