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, October 20, 2020

Wishin' . . . and hopin' . . and prayin' . . and plannin'

 The last few weeks have been interesting.  As I've been feeling better, I've had different thoughts come to mind.  Thinking about the future, what could come next.  Peter and I started talking about children again, and thinking about whether we want to adopt or if there are other options.  Peter told me he heard about some transplant patients getting pregnant.  I figured this was a really bad idea, but looked into it.  It looks like there are definitely risks, but that a transplanted heart can take the strain of extra fluid and weight from pregnancy.  I still think it is too much of a risk, as it can increase rejection.  But, we had looked into the idea of extracting my eggs in the past, with the idea of maybe doing surrogacy, and that was not safe when I was in heart failure.  But now, I wonder if it that could be an option. I emailed the team, but have not gotten an answer yet.  

I also started to think about work and school.  My initial plan, many years ago, before heart failure, was to get my PhD.  Could that be a possibility now?  Would I want to?  I think that what it has shown me that it is ok for me to hope again.  I realized that before transplant, even though we would think about the future, it could only go so far - to transplant, to after transplant, but not much further.  I don't think I really realized it before, than I didn't really think about the "after" transplant part.  And while there is still a lot more that has to happen to get to the future, I'm also excited about being able to think about it, pray about it, hope for it.  Who knows what will happen, but at least now I can look forward without the constant fear of "what if" over my head.

Today I even had my very first solo "outing".  I just went to Walgreens to pick up a prescription and some melatonin, but it was nice to be able to do something by myself.  


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1 comment:

  1. TabathaNovember 16, 2020 at 6:25 PM

    This one has me 😭 what an amazing feeling to have hope again! To look towards the future without a cloud of fear over your head 😍

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