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

Sunday, August 23, 2020

5 months post transplant

 It's the 23rd.  Funny how that day of the month didn't used to mean anything, and now it always will.  Today is 5 months post transplant.  It's funny - in some ways I can tell, and in others, things almost seem like nothing ever happened.  Today was a day like any other.  I woke up late (I've been having trouble falling asleep and am not sure why).  Took my meds, etc.  Peter was out in the shed working on his latest franken-mower (he is making one of our lawnmowers remote-controlled using parts from a non-working old wheelchair he got off craigslist), and I realized that it has been a LONG time since I've really be outside.  

I but on shorts and a short sleeve top since it was still in the mid 80's, and had a stroll thorugh the yard.  Lots of rotten pears on the grass beneath the pear tree, and my garden is completely overgrown.  I had such an urge to weed, but I'm not allowed for another 7 months.  Peter agreed to go on a walk with me, so we got Stella and walked around the neighborhood for a bit.  It was hot out, but not super humid, and I'm hoping this means that I can start to actually get outside again.  

Otherwise, I did some reading (I'm onto book 7 of the outlander series now), and it was an easy day.  The type of weekend day we often had before tansplant.  Some things are different - mostly that I have more energy, more pill alarms, and that I'm holding onto more water weight.  Getting comfortable is a little harder, and I think I need to start to working out my abs more to counteract my sore back.  I'm starting to think that some of my "water weight" is actual weight from having to eat so much more since surgery.  I keep thinking that my increased caloric intake will go away, and some days it does, but others I'm just ravenous. 

I think in some ways, the most interesting thing today was that I was just bored.  I read, we watched a little tv, I putzed on my phone, but I didn't really have anything to do.  I'm recognizing that this is just somewhat my state of being while the we are living in the times of covid, and funny enough am looking forward to tomorrow and needing to work.  

I have some creative projects that I could be working on/starting on, but none of them really were making me excited today.  It was only really towards the end of the day that I realized it is 5 months later, although if I had really thought about it I would have realized because my prednisone dose went down today. 

I'm still waiting to hear from the new coordinator about my biopsy results, but I'm assuming if it was bad they would have reached out already. 

So its a big day in some ways, but just a day.  Another day of figuring out this new normal being in quarantine.  I see less people walking around the neighborhood - I wonder if that is because people have started going more back to their normals.  Someone once said to me that things are close to normal 6 months post transplant - given covid, I don't see how that is possible.  But I guess I just do what I've been doing- taking it a day at a time.  Make progress in my movement/exercise so I feel better than before transplant.  We will see what the next month brings. 


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1 comment:

  1. Pastor BenAugust 25, 2020 at 1:50 PM

    I also noticed a lot of people walking around in March, April, and May, but not nearly as many any more. I, for one, don't walk around my neighborhood as much. My routine has changed significantly: I actually go to the office every day again (even when I am the only person there). But, I blame the heat more than anything else. It's much nicer to walk in the 70s and low 80s. When it's in the 90s, no one wants to sweat that much just for walking. Now, if you were playing basketball, or mowing the lawn ... you expect to sweat! But sweating just by walking? Yuck.

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