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, August 7, 2022

Remembering our beloved Jodie

We write with heavy hearts today. It is with incredible sadness and shock that we share the news that Jodie—a beloved wife, daughter, sister, aunt, friend, colleague and the strongest person we know—passed away on Wednesday, due to complications arising from heart transplant rejection.

 

This is an unexpected and devastating loss for all of us. We grieve with you.

 

A memorial service will be held the morning of Saturday, August 20 in Chicago. In lieu of flowers, the family is designating a beneficiary for donations. Final details on the memorial service and donations will be shared soon. A remote (online) viewing option will be available for the service.

 

For those following along on this blog, she did not have Covid; two PCR lab tests confirmed this. She was readmitted to the hospital on Tuesday under close monitoring and suffered a sudden cardiac arrest that night. The medical team was with her and immediately did everything they could to bring her back to us, but her heart was too weak due to the transplant rejection.

 

All who were fortunate enough to know Jodie have been forever changed for the better. Throughout her life, she was not defined solely by her heart disease—she was a brilliant scholar, a swing dancer, a compassionate therapist, an artistic quiltmaker, an advocate for young adults with chronic illness, a heart health hero recognized nationally at the Woman's Day Red Dress Awards. She always set her goals high and her dreams even higher. She achieved so many of those dreams and all of us got to bask in the glow of her achievements, and her boundless energy and light.

 

In recent years she helped hundreds of people, young adults and their families and communities, dedicating her adult life to helping children with chronic illness live fulfilling and meaningful lives. To teaching them that they can pursue all of their dreams, in spite of the challenges of their health conditions. To not be defined solely by their illnesses. She was a role model to innumerable patients, colleagues, and friends. Her impactful and meaningful work was recognized across the country and served as a model for other organizations assisting young adults with chronic illness. Her lasting impact will be felt in the coming years and decades as these young people go out and make the world a better place.

 

Jodie would want us to do the same.

 

With love,

Peter and the Neukirch Elliott family
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