4:45pm - So after coming back from the visit with Stella we were enjoying some quiet time together. I got a call from the transplant coordinator saying they had accepted an offer for a heart for me. The donor is a 25 year old female from a few states away, and it will be a dcd heart again (so coming in the box hooked up and beating). They said that based on what they know, it is a really good heart, but until they get their eyes on it they won't know for sure. Given what happened with the dry run, we are cautiously optimistic. We decided that we will tell our immediate family, but until we know its a go don't want to really shout it out to the world. We started to pack up my room, and a bunch of the things that Peter had brought me today we packed back up and had him take home. He then headed back to the house to pack an overnight bag (originally he was not staying over), and we are trying to get him an exception to the rule so he can at least be here when I go back to surgery. Since it would most likely be the middle of the night, there is a good chance of that.
I had thought it was weird that my doctor had not come in for the day yet, but he finally did. My guess is they knew there were whispers going on so wanted to wait until they knew more. He said that they think this heart looks better than the last one, but that it will take a few hours to fly there. The surgeon who was going to implant the heart last time is the one flying out to assess the heart and collect it. I really trust him, so I'm feel confident that he is only going to go forward if it is a good heart.
6:00pm - I had something to eat when they called as they said nothing to eat after 5:30pm. Now I'm sitting here waiting for Peter to get back. We plan to listen to a church service, pray, and try to go to bed early as we know people will be in and out all night. If things go well, I'll be going back for surgery in the middle of the night and by the morning it will have started.
9:50pm - Peter and I have been trying to sleep but it is hard. We are worried that they are not going to let him stay with me until I got back, and that he won't be allowed to be there when I wake up. I had a bit of a breakdown to the transplant coordinator, and she called the charge nurse. The charge nurse for my current floor said that since they are not busy, they will hold my room, and we can plan that Peter will come back after to "get my things". She offered to, if needed, send a nurse or other staff with him so he can stay as long as possible. She is calling the overnight nurse in charge and they are trying to get an exception for him. The other news is that when the transplant coordinator called, it turns out they are going to get a different heart for me.
Now it is a 29yo male who is closer. Apparently, right before they left for the other one they got this offer, and it is better in a few ways, including that it is not 'high risk', although it is dcd. My doctor felt it would be better overall, and he is on the way there as we speak. We were told that most likely I'd be brought over to the PACU around 2am and into the OR by 3am. After that, Peter can come back to my current room until he gets updates. If it is another dry run, hopefully they don't go as far and I'll come back to this room, where he will be. The charge nurse assured us that they won't just kick him out at 9am. And hopefully if it is a go, then he will know they started and can head home to deal with nervous energy.
By the time you would be reading this, the surgery has already started and it is a go. We know Peter will get updates, but are not sure if he will even be allowed in the building afterwards until it is time for me to discharge.
We wrote this together around 7pm (edited around 10pm), but I'm planning on posting this once Jodie actually get the call to go into the OR. I'll probably text parents and sibilings, but I doubt I'll be able to focus enough to write a blog post like this.
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 ...
Thinking of you guys today and hope all goes well!
ReplyDeleteLove,
Matthew and Emily
We are thinking of you Jodie and Peter. With Love, Aunt Elaine and Uncle Brad
ReplyDeleteHello Jodie and Peter, I've thought and prayed for you both daily. God bless you and keep you always! Blessings xo
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