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, April 10, 2022

And the beat keeps going on

 On Tuesday I had a most of the day appointment for my 2 year check up.  The actual appointment did not take too long, but we got labs, had a short visit with the doctor, then headed up to the cath lab. I was going to have a left heart cath to look at my arteries and a biopsy. Turns out we just did the biopsy because my kidneys still aren't "happy" and there was little concern for my arteries, so it was better not to do the procedure with the dye that is processed through the kidneys. 

No rejection, which is awesome. I spoke with one of the doctors on Friday as I'm concerned that my kidneys haven't been happy for this long. He confirmed that the most likely reason for this is one of my immunosuppressant medications. They decided to decrease my dose from 3mg a day to 2mg a day, and I'll get blood work in 3 weeks to see if it is making a difference. If not, we have some other ideas of things. One thing I knew intellectually but didn't really understand before was that the meds you need after transplant often cause other problems. It hasn't been too bad, but its frustrating to have problems that I literally can't do anything about because a medication I need for transplant is causing the other problem. 

In other news, Peter and I are getting close to being done with our house updates. We finally finished the master bathroom (minus some closet doors, and we are really happy to have it done. We have contractors coming on Tuesday to install the new kitchen countertops, and at some point soon our new siding should be installed. We only have a few small projects after that to do and then are feeling good about it. 

While our journey will continue, my hope is that less of it is related to my heart and more to other things we are doing. At least for now, I think this will be our last post. I'm grateful to be doing well 2 years out, and also disappointed that I'm not further along and still so isolated due to covid. I look forward to a time when I can really get out and see what my new heart can do in a way I have not been able to as of yet (as least for extended periods of time). We appreciate y'all supporting us through this journey. 

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