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

Saturday, July 23, 2022

Settling back home

 Yesterday (Friday) I got up expecting to be discharged in the morning, especially since they had taken out my neck line the night before. I packed up my sewing machine and was ready to go.  The team came in around 9:30am, and they still wanted to discharge me but also wanted me to get in one more treatment. My lab tests confirmed that my body had produced an antibody specific to my donor heart, and that this was new, since I did not have it back in April.  This is both good and bad.  Bad because now that my body has produced it, the plans for that antibody will be stored in my immune system's memory.  Good because now we know what to keep an eye on. The treatments I had in the last week first stopped my immune system from working and then got rid of 99% of all my antibodies, including the ones attacking my heart.  The doctor wanted me to do an infusion of a cancer drug that kills the cells that make antibodies.  This will make it so the rest of my immune system can slowly come back on line, but we will keep my body from making more of these harmful anti-donor-heart antibodies.  I'll do a weekly infusion for a month, and by then my body should "forget" to be looking for my new heart, be properly suppressed, and not start making the antibodies again.  We can also test my blood for if they come back, so we can confirm what is happening quicker if it ever happens again. The biggest down side is that my immune system is incredibly weak and will be for the next month and a half, so I have to be super super careful to not get sick. 

The infusion was going to take at least 3 hours, so I decided that I would unpack my sewing stuff.  I was able to cut out all the pieces for the rainbow throw quilt I'm making.  My dad came over to keep me company, and we chatted while I sewed.  It was a few hours before they got the infusion started, and I was able to get half of it done before I got tired and decided it would be better to rest in bed. Peter came over and was with us for some time, then took some of my stuff home and went to pick up one of my discharge medications and feed the pups. The infusion ended about 4:30, but it wasn't until almost 6 that I got my PICC line pulled and got my discharge paperwork. 


We ordered thai food to pick up on the way home, and happened to see two of my friends from work at the place next door. I walked over to say hello as it has been months since I last saw them, and that little bit of normalcy was nice.  Dad came over to the house, we ate, and then we played a board game. We said goodbye as he drove home today. Then I got to go to sleep in my own bed!

I slept pretty well, except Bosun woke us up at 4:30 because he was sick.  We got up and cleaned it up, and somewhat started the day. Peter went to pick up my other discharge med and some chicken (so we could put Bosun on chicken and rice for a few days). I went back to bed for a bit, then got up to start my day.  I was a bit tired, but my heart rate was in the 110's, so that was good. It was a mostly lazy day, and all the pets kept coming and just laying down/relaxing in the room I was in, somewhat near me.  I think we were all relieved that I'm home. I was able to do an instacart order from the couch, and Peter got some things around the house done. We didn't really get a chance to unpack from our trip, so that will be on the to do list in the next few days. I was able to take off the dressings on my neck and arm (where I had the lines) about 6pm, and I finally got to take a real shower, which felt soooo good.

We had a nice homemade dinner, found out a new season came out of one of our favorite shows so watched the first episode, then took the dogs for a quarter mile walk. At one point Stella was walking a little too fast for me and my heart rate got a bit higher than I'd like, but I felt ok once we slowed down. My guess is tomorrow will be more of the same. I definitely see a ton of improvement from before I first went in, and I think there is some from the last few days, but I'm definitely nowhere near full speed yet. I'll continue to try to be patient and slowly do a little more each day - hoping that helps me to heal, but not so much that it sets me back. 


We will definitely keep everyone posted in the coming weeks as we find out more. Next week Monday will be my big appointment with all the tests where we will see how much my heart has improved. So here's hoping for a very healing week. 


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