Jodie: The last week I've been noticably more tired. I was getting more tired at the end of the work day, but I did really think a lot of it. Then we went to Columbus, and as I realized that I could not walk through the terminals because it made me too tired, I started thinking that maybe things were a little worse. In the last week, I've needed naps (which I am never able to do unless I'm physically exhausted), I've been really winded from walks that normally don't bother me (like walking between two buildings), and I've needed more and more caffeine (tea or soda) to get through the day. My cardiologist had said that if I was feeling different, I should reach out. Last night I was talking to Peter and saying that I was hesitant to reach out because my guess was that the cardiologist would say I needed to go into the hospital.
Peter: Seeing Jodie pushing through this past week has been difficult. When she got to the point that she wasn't sure whether or not she should reach out, we talked it through. While I don't want her going to the hospital with the possibility of staying indefinitely; I also don't want her safety or health to be compromised just because we were being stubborn. Her health is more important to me than my comfort, and I convinced her that she needed to reach out and trust that her doctors knew what would need to be done.
Jodie: This morning I sent an email to my doctor, and within an hour and a half he had responded saying that the wanted me to come into the hospital to be put on an IV medication that may help. I replied asking if this meant I would be in the hospital until transplant. He said that is the most likely possibility. Going on this medication will move me to a level 3, and depending on how I respond he may want me to get a balloon pump, which would require being in the ICU but would move me to level 1. There is a small chance that I could go home with an PICC line (an IV that is safe to have longer term) and the medication, but it is not as likely. The nurse called me around 1pm and I have to be at the hospital on Sunday between 2 and 5pm. So the rest of the day was spent with trying to tie up loose ends, and then I rushed home so we could figure out what our plan is for the weekend and to meet with the contractor, who is starting on Monday.
Peter: To some extent, it feels like we finished none of the things that we wanted to have done before she needed to go into the hospital. It was a bit of a shock to hear that Jodie would be expected to go in at the end of the weekend. Looking at things logically shows that we have more done than it feels like. The contractor for the bathroom will be starting on Monday, and should be done within 2 weeks. Our neighbors are willing and able to take care of Stella during this week. We have kept our family and friends informed of the situation. And we feel so supported and loved by everyone who follows the blog and keeps us afloat with kind words and prayers.
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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