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, March 9, 2022

Covid isolation

 Before you worry too much, no, I don't have covid, and no, I was not exposed.  Two years ago, due to having a fever and issues with keeping my oxygen up, I was one of the first Duke patients to go into covid isolation despite my team not thinking I had it. Now that I'm not out of it, and can look  back, that was a crazy time. 

Growing up, I loved the book "the hot zone" and watched the movie, fascinated with the isolation and how the researchers and doctors had to suit up to go in. I thought I would want to study viruses because it was so cool. Later, after I started actually working with bacteria, I realized that was more my interest.  But learning in grad school the info about how infections happen, how they spread, and how to protect yourself, I remember feeling really safe at Duke.  I wasn't happy to go into covid isolation, and they did not handle it in the best way, but I remember thinking that even though I did not have covid, I felt safer to know that if anyone else in the hospital did, they would also be isolated. 

Granted, the intrigue at the process, watching the nurse and doctors gowning up in the negative pressure room, feeling like I was in a fishbowl, did get old after not too long. I was really lucky to actually work at the hospital and have friends who also knew the rules, so we could figure out a way to get me phone numbers so I wouldn't be so bored. 

I was also really worried about not being on the transplant list and what that would mean overall for the timing, and was itching to get to see Peter again. I don't think we told you how it went for us to get out of isolation. 

I went in on a wednesday afternoon that I was moved up to the ICU for isolation, and I think the team scared my dad and Peter as there were all of a sudden a bunch of people in the hallway outside my door, including people in suits (which means adminstrators).  As the morning progressed, they kept putting different contact precautions on my door, and even made dad and Peter put on masks (and maybe gowns, I can't remember)

Then they told us about going upstairs, but it was pretty hush hush.  They gave Peter the bags, including the one that was supposed to come with me with my phone, and walked me to the ICU.  It was so quiet, since I was mostly alone in the room. I luckily started feeling better Thursday and Friday.  On Friday we got the news that even though I was feeling better, I needed a negative covid test. The state lab could not run my sample, so they sent it somewhere else.  On saturday in the early evening, we were told we would get the results. As soon as the negative result came in, Peter immediately drove over.  The nurse had opened my isolation doors and I was expecting to be moved that night. 

Peter got to my room, and a few minutes later the nurse came to let me know that there was some grumbilng because my test was a "presumptive negative" since it was not an fda approved test, and some of hte doctors wanted to put me back in isolation until I had an approved negative result. Mind you, I don't think there really were fda approved tests at that point, and if there were they were few and far between. I decided that I was done with being cooperative, and I called my heart failure doc on his cell phone to tell him the situation. He let me know he would handle it.  

The transplant team was able to talk them down, and we were told that since it was so late (after 10 at this point), that Peter could stay over and we would be moved on Sunday morning. Looking back, I can see the humor in some of this, but it was definitely not as humorous at the time. 

I'm thankful that this happened right at the beginning, before there started being a bunch of actual covid cases at the hospital. Hopefully they were able to learn some things in terms of gettting in and out of the rooms. I never thought that 2 years later, there would still be patients with covid in the ICU's or us having to worry about going into covid isolation or quarantine. It's definitely been an eventful two years!

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