We have moved into Step 3, which is waiting while for the doctors to look at the results, decide if they need more tests, and then decide how severe things are so they know both how to list me and what the plan is going forward. We thought this would be a good time to reflect on the process thus far.
Jodie: In some ways it seems like this has been going on for awhile, and in others it seems like this happened really fast. In reality, it has only been 16 days since my doctor called to say that we needed to do the evaluation, and now it is (most likely) complete (unless they need other tests). Some of the days went really quick, and others felt like they took forever. I was completely wiped from the 3rd day of the eval, but not the others.
Peter: To me, it seems like the past 16 days have individually dragged on, but collectively flew by. The intensive evaluation period seemed like so much was so densly packed into such a short period of time; that it doesn't feels like we're at the beginning of the process anymore. Nevertheless, when the transplant team reviews the results; they will be able to lay the groundwork for how we will be spending the time (for example, if we have to do other things) while we wait for a match for Jodie to become available.
Jodie: Right now I'm feeling grateful that this has happened already. I am also grateful to my boss and co-workers for looking out for me, helping change my work responsbilities so that whenever I get the call it will be easier to manage. I have had so much love come in via facebook, text, the mail, etc, and it makes me both appreciative and humbled. Thank you to everyone who is walking on this journey with us. I didn't realize that knowing I'm being supported by people from all parts of my life would make such a difference. Please know that I have appreciated and cherished every comment, like, etc and it helps to keep up my spirit as we go through all of this. We have been writing a lot since it is so early in the process, and while I'm finding being able to share helpful both in explaining to others/keeping them up to date and in my own processing, don't be worried if it slows down a little as we are more in the waiting periods.
Peter: It's exciting things are moving quickly and so far so smooth... Duke really has their shit together, and it is refreshing to be able to see the way forward using such a well planned methodology. That being said, I'm often finding that I'm feeling overwhelmed and I need to sit down or step away to process. It's a stressful situation all around, and I constantly feel like I'm behind or not as prepared as Jodie. I'm worried about stepping into the role of the caregiver when it comes down to getting the call... will I be ready? Will I know enough? Will I be prepared to deal with all of the information, all of the things that have been done, all the things that will need to be done, and all the unknown future things for which I can't even expect or prepare? I may not always have the bandwidth to respond or communicate if you reach out to me; but it is absolutely appreciated and extremely helpful to keeping me going; and with your support I feel like I will be better able to support Jodie. Thank you to everyone who has reached out to Jodie and myself, and I'm so thankful for the support we have received.
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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