In some ways it is hard to believe that it has only been 3 months since transplant (and 2 more weeks since I went into the hospital), and at other times it feels like it has been longer.
When I was started the transplant evaluation, I reached out to a friend of mine who had a heart transplant a few years ago. He told me that the first year was really hard, and that he couldn't fully explain how or why. I'm starting to understand that. Nothing bad is happening, but things are starting to be hard.
I'm still dealing with some side effects from medicaitons. I keep gaining water weight, which is making me uncomfortable, making it harder to walk without getting short of breathe, is frustrating. I've been getting headaches more recently, and its unclear if it's sinus related, migraines, or related to meds. This has made me less able to do some of things I had been doing, and has been making my mood slightly worse - more irritable, frustrated, etc.
I also started cardiac rehab on Monday last week, and I was not impressed. There were more people than I expected there, they had me clean my machines after use without really closely watching, and that means that I hav eno idea how well the preious patient cleaned it. She even had me use a machine that someone had just gotten off of. I used purell a lot during the sessions, but it made me really uncomfortable. Plus, my blood pressure was high when I started and really high after exercise, so they had to check in with the nurse to see if I eas even allowed to keep exercising. So I was obviously frustrated and not happy, and that also meant that she was very catious about what she recommended I do at home. The team changed my meds around, so hopefully its better next week.
On one hand, I feel so frustrated, and there is so much out of control. On the other, I feel selfish because I should expect this and there is so much going on. I'm working on getting the support I need, but it is hard. In ways I would not have expected. I am praying for the peace to accept things that I don't like, and to help calm my anxiety about my health. Overall, I'm told I'm doing really well healthwise - its more about my ability to deal with it now.
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
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One month post transplant!
Wow. It is almost unbelievable that it has been one month since the transplant. So much has happened, with two weeks in the hospital, and ...
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