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 28, 2020

Gratitude

Today has been a slow day.  I didn't sleep well (which may have been due to a very cute puppy wanting to sleep right where my feet go overnight and refusing to move), so I ended up taking a nap after meds and breakfast.

One of the staples of when I sleep is my heart pillow.  Most hospitals give you this when you have a heart transplant.  It is the perfect size and shape to hug onto, especially when doing certain things that usually use your arms - since you can't push on your arms for 8 weeks.  I had thought, in 2007, I would get one after my open heart surgery but did not and was really bummed.  I am delighted to have this, and it says Duke on the back.  I will cherish this 'gift' going forward, as it was a comfort to me in the hospital and continues to be that and a reminder of the miracle gift of this heart. Its also really useful to hug onto at night so I can sleep on my side without my chest hurting as my muscles regrow and get stronger.


 It has  made me think of the outpouring of support I've gotten during all of this.

Whether it has been via cards, compression socks, kids drawings, stuffed animals, prayer shawls, sour straws, cuddly/soft things to use, flowers, gift cards, or well wishes via the blog, facebook, or via phone/text, please know how much your generosity and care has meant.  This journey has been exciting, scary, joyful, lonely, fulfilling, and frustrating all wrapped into one.  Seeing the support from people from all different parts of my life - literally from elementray school, high school, college, living in Seattle, living in RI, the camps I have worked at, and from now living in NC has been amazing.  When I was stuck in the hospital by myself, seeing how many people were wishing me well and that they cared enough to do something to let me know really helped to keep my spirits up.  Talking to and texting with so many of you has helped me feel connected.  I truly, truly could not have done this without your support. I tried to get a photo of all the things that folks have send/given us.  Speaking of gifts, today we recieved a random package - if you sent us a panini press, thank you and please let us know who you are! (there was no note).  To everyone, thank you!


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1 comment:

  1. UnknownApril 30, 2020 at 11:30 AM

    wow, a pannini press in the mail. that is great. It is good to see you and your pillow. You have a puppy, what a great love that is. i think of you often.
    shelia

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