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, April 7, 2020

What is normal?

Jodie is home and that is amazing. Sometimes we have both found ourselves still getting a little emotional when we can simply reach out to hold hands; just knowing that we're finally together again. It feels like an eternity, but relatively speaking, her recovery is flying by.

My wife is the best. They told her that she needed to walk a mile before they sent her home, so she did it way ahead of schedule for anyone else with a transplant less than two weeks prior. They told us to expect that after waking up from transplant, most patients need stay at the hospital for over two weeks... so Jodie did it in twelve days. Yup, amazing. I am so blessed to have her in my life.

Now that she is home, it is difficult figuring out what constitutes a "normal" day for us, or what we can expect Jodie to "normally" be able to do. She needs more time to get things done, but has way more energy than she is used to. We need to keep her moving, however she also requires a lot of rest and breaks. Her appetite is almost always going, and we left the hospital with instructions to eat fats and proteins to help build her body back up to full strength. She needs to walk as much as she can, but without her new wheeled walker (I call it her chariot), walking is an extremely draining activity

We actually got to take a walk together with Stella! We went outside! Twice! I walked the dog, and Jodie took her chariot. We went down our driveway, to the end of the block, and back again... I think it was close to 0.2 miles each walk, but with significantly more inclines than the hospital. We will be planning to walk a few times every day, and go further and further as Jodie gets stronger.

Thank you for all prayers and well wishes. Thank you for following with us on this journey. God bless.
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1 comment:

  1. UnknownApril 8, 2020 at 3:38 PM

    Jodie is absolutely amazing! And you are an amazing support for her Peter!
    xoxo Aunt Elaine

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