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

Wednesday, April 1, 2020

Healing while 'alone'

This has been an interesting time. Normally after a transplant, they restrict visitors to keep people healthy. However, with the covid-19 stuff going around, they're are NO visitors allowed. Let me tell you, this is hard. The nurses and doctors have been fantastic, but there is something about not actually having any physical contact, anyone's hand to hold, to look out for you while you're not feeling well, that is really off. I understand from an infection control standpoint, but from a physical/ mental health standpoint it is not the same.

Peter has been wonderful, and has been keeping up with several doctors/nurses and video chatting with me at least once a day. But it's not the same. I know he would be here in a heartbeat if he could. 

This has changed the nursing relationship a little. They always care, but I do feel like they are trying really hard to also be our friends/confidantes/cheerleaders too since it is so restricted. I know I miss my family and can't wait for a hug from Peter. But I am grateful to all the people trying to make this situation less bad. 

I had my first biopsy on Monday - they do a catheterization and pull out four little bits of the new heart to analyze. Results were great, and so far no sign of rejection (which usually happens at some point but we want to keep off), so I'm thankful for that. 

Right now my job is to walk, cough, eat, and control pain. So far today I've gotten in 4 laps twice, and 5 laps twice more (18 is a mile), and I have been shooting for the mile. Which I got this afternoon! Walking is helping my chest tubes drain, and once they get enough fluid off the tubes can come out and I can go home. We are praying they I can be discharged by Friday afternoon.

Love and miss you all. As I'm getting stronger I'm more up to calls and texts. I've been loving random videos and photos of your kids and pets.


at
Labels: ,

3 comments:

  1. UnknownApril 1, 2020 at 11:27 PM

    Love to you Jodie! Aunt Elaine

    ReplyDelete
  2. Uli and familyApril 2, 2020 at 5:14 AM

    You are walking a mile a day? That’s fantastic! Great results on your Biopsie. Your medications are working and you are certainly doing everything in your power to get stronger. This really is awsome!

    Life as we all know has changed. As a primary care nurse and care coordinator it has been very challenging handeling the daily changes. We are the ones patients look to for answers and during this transition protocols changed daily and sometimes our answer was „These Are our recommendations today.....“. Yesterday was my first day at work in 3 weeks that felt somewhat more like a routine. It is hard on so many levels and everyone is effected by this. I have not gotten a hug from my husband or kids in a week. Even though I Strip in the garage and shower after every shift etc we have separate bedrooms and bathrooms now too. He has underlying lung issues and this virus wiould certainly be devastating for him. All I can say is be kind to each other, be respectful to each other and stay home. Primary care Drs are switching to telehealth, learning the hospital software in case they are called into the hospital for back up. I’m praying for all of us especially the front line people!

    ReplyDelete
    Replies
    1. UnknownApril 7, 2020 at 2:05 PM

      Thank you Uli for your work on the front lines of this crisis. Be safe. Elaine

      Delete

Subscribe to: Post Comments (Atom)

One month post transplant!

Wow.  It is almost unbelievable that it has been one month since the transplant.  So much has happened, with two weeks in the hospital, and ...