Thank you to everyone for your support yesterday. This has been such a long journey in a lot of ways, and between steroids making me more emotional and missing Peter/ any type of physical contact, yesterday was a rough day. I had an awesome nurse who was really great at helping me to see that what I was feeling was a normal response. I also realized that part of the problem is that I feel SO GOOD. I literally, even with aches and pains and healing, have more energy than since at least 2007, if not ever. So I'm stuck in the hospital without much to do, feel like myself, and have all this energy. The nurse coordinated Peter dropping off my computer and a few other things, and I allowed myself to just enjoy some show (finished the Marvelous Mrs. Maizel and started Making the Cut).
I also had a lot of time to really just contemplate. Even though I was so disapointed, I'm realizing that it has not even been 2 weeks since my transplant. I am so, so grateful for how good I feel and am realizing that as much as I want to get home, I need to just trust the process and recognize that I'm doing well.
They took out my last chest tube today, and I'm working on getting in my mile of walking. I have a biopsy and cardiac MRI on Monday, so if everything looks ok I should get to home monday or tuesday But if it is later, that is ok too.
I got some paperwork today about providing information to the donor family. I am actually really excited (and a little daunted) to write them a thank you letter, because how can you thank someone enough for this gift of life? Please continue to keep the donor family in your prayers.
I hope you all have a wondersful weekend. If you're able to be with your family and pets, give them an extra hug or pet for me. I am looking forward to being home.
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 ...
The whole process is just amazing and I am so thankful that you have a new heart and are doing so well. Your donated heart has healed you and your letter will help heal the donors family.
ReplyDeletexoxo Aunt Elaine