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, March 21, 2020

Some fresh air

I didn't sleep well last night. The up side is that when I mentioned it to the NP, she said they are going to make it so no one enters my room from midnight to 6am. Right now they have been waking me around 4am for vitals.

Mid morning we got notice that starting Monday, no visitors allowed. I won't lie, I panicked a little and started to cry. They think if a heart is found they will make an exception, but otherwise Peter is not allowed. I called Peter and he got over as soon as he could. I understand why this makes sense from an infection control standpoint, but it is so hard. We got permission for me to get an "off-floor pass", and he wheeled me downstairs to the courtyard, which is outside and has a little greenery. We just sat there for about half an hour, but it was really nice to be outside. 


After that I needed a nap, we had dinner, and enjoyed a quiet night in. Peter had made me a short playlist, and we turned on some music and danced to three slow songs.  Pro tip - when dancing with an IV pole and IV, if you lead a turn immediately lead in the counter turn so there is no catching on the tubing.  It was a really nice night.  I gave Peter a few things to take home that I won't need (games for more than 1 person, a book I'm done with), and a list of things to bring tomorrow.  We have big plans for tomorrow - the doctor said that if there was a way that I could see my dog Stella we should try it.  With my off-floor pass and a little creativity, we are going to be able to do that tomorrow.  I'm so excited to see her and get to cuddle her, even if it is in a wheelchair and just for a very little bit. I haven't seen her in two weeks, and I'm hoping that between my visit with Peter tomorrow and the Stella cuddles, that can sustain me in however long it will be until I'm allowed to have visitors again. Just trying to make the most of our time together before it gets more restricted.
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2 comments:

  1. Uli and familyMarch 22, 2020 at 5:30 AM

    Those puppy cuddles will work magic! If you have your phone you could FaceTime and dance with Peter that way. You two have some great moves I remember your first dance at your wedding with admiration :). Do you cross stitch? Do you like jig saw puzzles maybe you can do some more crafty things because you like that so much! Our daughter Victoria did a Zumba class with her friends over the phone- one of her friends is in Spain! Dave my husband and I walked the dogs with his coworkers and their dogs over the phone. I will send you a picture if I figure out how or text it to Peter. Can you listen to books on tape? We have a service we use called Scribd. It’s free and I use my I pad. I think your phone would work too. I use it so I can knit and crochet or cross stitch at the same time.
    I send you both big hugs! I will continue my prayers. 👏 Please keep writing as it helps me and dancing. Turn on ocean wave sounds on your phone, close your eyes and dream of Main!

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  2. UnknownMarch 22, 2020 at 11:47 AM

    Glad you were able to have some time outdoors together and that you will get to visit with Stella. This adds yet another challenge for the two of you. Your great love for each other will get you through this. Love, Aunt Elaine

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