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

Monday, April 27, 2020

Thinking ahead

Normally when you have an open heart surgery, you start cardiac rehab about 6-8 weeks after surgery.  Given what is happening with covid, it is unlikely any facilities will be open.  Even if they are, given my level of immunosuppresion, it would be a big risk.  Talking with my nurse coordinator today, she feels like the risk outweighs the benefit.  We talked through what other alternate options are. I have done cardiac rehab once before, and most of it requires an exercise bike, a treadmill, and small weights. 

Given the risk of going out and that 8 weeks out is only 3 weeks away, I decided to go online and see if there were reasonably priced foldable machines, as we don't really have room for a gym in the house.

Peter came over when I was looking, and we were able to find a foldable exercise bike that was reasonable. We added it to the cart. Then we looked for treadmills.  We found a good one and it was in stock, but kept looking to see if there was something else that made more sense.  Literally less than 10 minutes from then, the treadmill is not unavailable.  I had Peter go to the cart and buy the exercise bike immediately.  We found another similar foldable treadmill that was in stock, so again we immediately purchased it.  Then got some of the interlocking foam mats to go underneath it.  All of it will be here withing 2-3 weeks. This was not the original plan, but cardiac rehab was extremely helpful to me in the past, and I'm not willing to either set back my recovery or risk infection, so I think doing something similar to cardiac rehab at home is the best call. I'm really grateful that buying these is an option, both in them being available and that right now we can finacially do that. I'm more and more grateful for our privelege during these times.

I get to call the actual cardiac rehab program tomorrow to see if they are willing to do virtual visits or consults to help give me an exercise prescription, and if not then its good we are friends with some PTs.  I also have my contacts at Duke Health and Fitness.

This should be interesting.   

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