In between appointments, trying to get in exercise, working, and the other things to take care of myself (eating, napping, etc), I'm also trying to work on sewing projects to give myself some sense of normalcy. It has been a challenging week. One of our dear friends lost her partner unexpectedly in a tragic accident over the weekend. Covid has made it so I haven't been able to be as available to her as I want to be, and its been a sharp reminder that life is going on despite covid - both the bad and the good. It's also been a recognition that some things feel more important than infection control, even though that is terrifying to really think about. Trying to be authentic with everything going on is hard, and unfair.
On Monday I had cardiac rehab, and once again my blood pressure was high. They made some changes again, and while I trust my team and know it will eventually get under control, its also very frustrating. I'm not even allowed to walk or pedal at what is a normal/comfortable pace for me - and I'm trying really hard to not get discouraged, but still being in a place that I have to hold myself back to be safe is just frustrating. I know that over time this should even out and I will be much more able to be athletic than before transplant, but right now it feels like I'm just stuck. I went to the gym before transplant and was constantly battling to stay motivated when I couldn't do anything that felt like exercise. Now, I physically can do things that feel like I could be pushing myself, but it isn't safe yet. In some ways it feels worse, as I'm having to actively hold myself back, and before at least I could go at what felt like a natural pace.
The current sewing project I'm working on has proved to be more tricky than I expected - there was just not quite enough fabric, so I had to figure out some creative ways to get around it. Then when doing the binding, I realized that to really do it right, I needed to do some hand sewing. This is not my strong suit, is tedious, and is time consuming. But it is the right way to do this. So I'm having to take it one stitch at a time. That seems like an appropriate metaphor right now - it seems like a lot of things in life are going one stitch at time. And they are frustrating and harder than they should be at times, and not coming out the way I had planned. I just hope that the end results are close to what I have in my head, both in terms of the sewing project and in terms of life.
Please send positive thoughts and prayers to our friend who is grieving, and to me for perseverance. Given that covid is surging in NC it is hard to see where things are going to even out and normalize, and I would love a little normal right now.
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
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One month post transplant!
Wow. It is almost unbelievable that it has been one month since the transplant. So much has happened, with two weeks in the hospital, and ...
We love you, Jodie! Perfect "one stitch at a time" metaphor. I'm praying for your friend, knowing God has taken care of her partner. And I join you in that experience that life goes on - the bad and the good - during this pandemic. For example and on a good note, I put Jonah on his back on the sofa the morning to give him some medicine for his extremely runny nose. I walked back to the kitchen and when I turned around, he was standing & leaning up against the sofa ... with the remote in his hand. Next thing I knew, the TV was on. WOW that happened fast!
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