Jodie's Journey: Blessings in the unexpected

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

Saturday, May 2, 2020

Blessings in the unexpected

Since Jodie got home, a lot of adjustments had to be made for me to be better able to help her. And as she has improved, a lot more adjustments are being made to accommodate her increasing ability to be independent. Its been a constantly shifting situation that will likely stabilize further in the next couple months. We take each day as it comes, and thank God for having the ability to be flexible reacting to unexpected changes.

Jodie has been keeping herself very busy cutting fabric, getting masks put together, unpacking stray boxes from our move two years ago, cooking lunch/dinners, re-organizing her sewing room... and I've even caught her on her computer responding to work emails and calls. Yup, I'm so done trying to get that woman to sit still; but I wouldn't have her any other way.

We recently made the decision to swap her sewing room with the space I was using to work from home. Now I actually have a home office with a door that closes, and I can keep my 3d printer running making mask ear-savers (without worrying about the cats trying to help). Its wonderful to finally have space to spread out my projects and set out some of my stuff that have only seen boxes for the past few moves.

All of these things are changing around us; some of our own volition, some happening to us. Through it all I am struck by how blessed we are to have each other during this time.

God bless, thank you for reading, following, and supporting.

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WHAT IS THE HEART TRANSPLANT PROCESS?
1) Have a severe enough condition to be referred for evaluation for heart transplant.

2) Get evaluated, which includes a bunch of appointments and tests to determine that the rest of the body is healthy and functioning as expected.

3) Wait for transplant team to review results of the evaluations to see what priority level you qualify for and then lists you for transplant.

4) Wait until a suitable heart becomes available, that nobody above you on the list can use.

5) Get the call, and go to the hospital when they say. Hope it is not a dry-run and the transplant happens.

6) Start recovery process in the hospital. Typically 10-14 days before allowed to go home.

7) Continue recuperating at home. Expect lots more doctors appointments and medications moving forward to keep an eye on health.

8) Enjoy a long happy life.

*We will italicize each step as we work through it