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

Thursday, April 2, 2020

Trying to keep a schedule

So I've noticed that days here are either very busy or more erratic - lots going on. Then periods of nothing. There last two days I've been trying to keep to more of a schedule. I woke up about 6:30 and slowly get up, etc. Then breakfast, doctors tend to stop by. They were happy with my right drainage so one of my chest tubes came out today. That is a big step, so I was excited. The left was close but not quite there.

I got in an initial walk of 4 laps (18=1 mile), then was able to have a few nice phone conversations. Occupational therapy cleared me for home and said physical therapy did as well. After that I was really sleepy. I think it is related to my body needing to heal from the tube being pulled. I asked them to hold my lunch so it could be reheated, and I took a nap from 11:30-1:00. Of course they came and delivered my new walker, which I'll bring home with me, during this.

The nurse got me up, I ate, then scheduled a virtual walk with a friend in Seattle. While I did my 5 laps here, she took her puppers for a walk, and then we chatted for awhile. It was really a nice motivator.

Soon enough dinner was here, I ate except for my dessert then did another 5 laps. Now I'm relaxing and enjoying my chocolate chip cookie and chocolate pudding. I'm tired and want to nap, but also know a good night sleep is really important, so I'm going to try to just stay up a bit longer to get in my last laps, video chat with Peter, and then hopefully get a full night sleep. A musician friend in Nashville was doing a Facebook live stream so I watched for awhile and it was really great. Then I got to talk to Peter.  I'm really, really, really hoping that tomorrow is the day I can go home - I know it sound be within the next few days, but I'm praying for a reunion tomorrow. I cannot wait to actually be able to hold Peter - I haven't even held the hand of someone I know since I was wheeled back for transplant on 3/23. I am so looking forward to the physical contact - just a hug, etc. When we get home I'm going to promptly want a real shower - all we get here are wipe baths daily, and I can't wait to get clean. Then a good dinner, and sleeping in our bed. Excited to see the pets too, but it's really these little things that I miss. 
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2 comments:

  1. Uli and familyApril 2, 2020 at 9:53 PM

    You have come such a long way in such a short time :) coming home will be wonderful!

    ReplyDelete
  2. UnknownApril 3, 2020 at 1:52 AM

    I am amazed at your progress and so happy to hear that you are doing well, and can go home soon! xoxo Aunt Elaine

    ReplyDelete

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