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

Friday, March 13, 2020

Hurry up and wait

No major updates, just posting my notes that I took when I got a call from Jodie or talked to a nurse yesterday.

March 12, 2020

7:45am:
Call from Jodie
Sounds stronger
She is able to get up and move around room to use the restroom
She got up to sit in a different chair for a while earlier
Actually slept well last night!

8:30am:
I called her nurse
No big news
Decreasing oxygen assistance slowly, her breathing is getting much stronger

12:10pm:
Call from Jodie
She says she is feeling better
Still tiring quickly, but sleeping more

3:42pm:
Jodie called
She told me more than I wanted to know about "the amazing pee thing"
She is down net 300 mL+ less water weight (total over 2 L by the end of the night)
Took a really good nap
Getting up and sitting in a chair
She asked for numbers for some people since she is getting restless without phone or books

5:15pm:
I got a call from the nurse
Confirmed that she has received list and already started calling people

8:00pm:
Jodie called
Feeling much better and wanted to chat
Talked about bathroom work progress
She asked for me to read to her before bed

9:45pm:
Jodie called
Book at the ready
We got through the first half of the first chapter of Harry Potter and the Sorcerer's Stone
(Up to Dumbledore showing up on the corner)
Book definitely providing a comforting familiarity
at
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4 comments:

  1. Uli and familyMarch 13, 2020 at 10:10 AM

    Love it you 2 rock!

    ReplyDelete
  2. AnnaMarch 13, 2020 at 10:17 PM

    Dear peter and Jodie
    We send our biggest love & prayers and strength to you & Jodie at this time !!

    ReplyDelete
  3. Dr. BranchMarch 14, 2020 at 8:07 AM

    Good Morning! 🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾

    ReplyDelete
  4. UnknownMarch 14, 2020 at 9:10 AM

    Sending prayers for Jodie and Peter. Back in Belfast. Love, Granny Sally and Papa Ken

    ReplyDelete

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