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

Sunday, July 17, 2022

Treatment and Distraction

 Today went well. I was woken up at 6ish for vitals, and I actually got some sleep so felt awake.  I did a CHG bath (antibacterial wipes that are safe for the lines I have), put on a new gown, and I felt awake.  I took out my cutting mat and some fabric and started working on a sewing mat with pockets for my guild swap in a month. I made some good progress, had breakfast, and then it was just time to wait for the plasmapheresis.

They were planning to come at 9am but had an emergency patient so got to me about 11:45. That worked perfectly with Peter getting there. I wasn't sure what to expect, but it went well. They hooked me up to two tubes through the vascular catheter in my neck - one to take the blood to the machine to filter out the plasma, and another tube with 3 components they put back in - my filtered blood, some albumen which is a plasma substitute, and some calcium to keep my system happy. I responded well so it only took 68 minutes instead of 90-120 because they could run it at a good rate. We were able to eat lunch while it ran, so that was good.



I was a bit tired afterwards, and they needed to start my other treatment really quickly due to a surprisingly short timing window. So, I stayed in bed and let them do the pre-meds and then the rat-g treatment, which ran 6 hours and ended about 9pm.  I even got in a good nap in the middle of that. This worked out perfectly, as it needs 12 hours optimally before we do the next plasma pheresis.

My understanding is that my body is making antibodies that are attacking the heart, so the plasma pheresis is removing most of them, then the rat-g is attacking the cells in my body that would be making more antibodies. The goal is that less antibodies attacking, the more my heart can heal. The downside is that this is going to wipe my immune system down to about 0%, so with visitors (even Peter and maybe even the nurses), I'm going to be wearing a mask in here along with everyone else. 

This is very serious, but my doctors are hopeful. The hardest part is that we just have to be patient and wait, as we won't really know how well it worked until at least the end of the week, and most likely further out. Given this, my plan is to distract myself as much as I can. I was able to start sewing some today, which is a perfect distraction for me. It isn't strenuous, it engages my mind and my hands, and I feel productive. 



I was able to do 9 laps today (3 laps, 3 times! 15 laps around the unit is a mile).  My breathing is good, heart is just working really hard. They put in a PT consult for tomorrow so I can get an idea of how much to try to do each day to not get deconditioned but also not push too hard. 

Thanks to everyone who reached out and sent me lovely videos and pics of kids and dogs. It is nice to see others having fun and have things to look forward to. There most likely won't be much changing each day, just having multiple long treatments, plus possibly having to take a day off every few days to give my body a chance to catch up. We will be keeping you posted!

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