Jodie and I have been through a lot together, and I have loved every second of it. I have learned more and more over the years about her and her heart, but I cannot fully grasp the amount of knowledge and experience she has acquired through living with knowing eventually this time would come.
I am learning as much as I can about this process as we go, and I try to take notes during most of the appointments I attend with her and her doctors. I am planning on keeping the blog updated with the layman's terms and the my-perspective notes from an involved party with less of the specialized knowledge that she has.
We knew things were rolling in this direction over this past summer, and when we went in for her 6-month (twice-yearly) follow-up in August, her doctors scheduled her for a two-month follow up; which was much sooner than her regularly scheduled appointments normally were. In October, we sat down and were told much more directly that if things weren't improving (either declining, or staying the same), then we may have to look down the transplant route.
In January this year, Jodie went in for a stress test to determine how well her heart was working. At the following appointment with her doctor, we had a combination of mixed results that were not conclusive. By that I mean that while the stress test numbers were better than expected, but they did not match her symptoms, which led her doctors to believe that they needed more information before we could make a decision to move forward. We scheduled Jodie for another stress test, but a more invasive one that would also measure pressures in her heart while exercising.
February's test was a couple weeks ago, and we expected to get the results from the doctor early the following week. However we received a call from her heart doctor on Sunday afternoon (last week), and he told us that he was cancelling her appointment for Tuesday. Jodie was told that the tests definitely came back conclusive, although much more severe than anyone would have expected. She should expect to start getting calls for scheduling tests and examinations to evaluate her for the transplant list. At this point in time, she is scheduled for 6 tests, labs and 7+ appointments over the next 8 days. After the results from the evaluations are in and processed, the transplant team will meet to review the information and decide what priority level Jodie will be on the list.
I will be with her during most of the appointments, and I will be taking more notes.
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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