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 now two weeks home.
One month ago, at this time, Jodie had been brought out of the procedure room with her chest still open, hooked up to artificial means of running her heart and lungs, and stilll sedated. Each week since then has been full of leaps and bounds towards recovery.
Week one after transplant brought with it Jodie getting patched up, unhooked from major support machines, and already walking down the hall of the ICU! Week two included stepping down to the main hospital cardiac care floor, lots of tubes being removed, being allowed to eat real food again, getting unrealistically challenged to walk a mile a day (and doing it anyways!), and finally being discharged back home!
Week three started with us getting used to being home together, and reveling in the companionship after so long apart. Jodie had some ability to move around, but needed her walker and lots of rest. Week four included the incredible joys of compression socks, and much improved mobility. Changes in medication made things much more comfortable. An the follow-up biopsy appointment results showed zero rejection!
From the personal side, Week 1 was tough. In the hospital, I was in and out of it and having very short times where I had the energy to call Peter. For Peter, it was nerve wracking and he was calling the nurses every 3-5 hours hoping for updates or results. Week 2 I was a little better in terms of being able to hold up my phone, so I got to "see" Peter a lot more. As the week went on and I felt better, I got frustrated with not being able to have anyone around - it was lonely and I really just wanted to go home. For Peter, it was much less stressful in terms of worrying about me medically, but significantly more time spent missing Jodie and feeling lonely. We were both ready for me to come home.
Week 3 was both wonderful and hard. It was so, so good to finally see each other again and get to be home. It was hard because there was still so much I could not do, and Peter had to really step up to help me and be extra hands, while keeping up the house and working from home. Week 4 we started to get into more of a rhythm, and can recognize patterns. As I've been stronger, I've been able to help Peter a little with things like laundry and dishes, which helps me feel more like myself. There is still a lot that Peter is having do, as I have limited energy.
Things are finally beginning to feel more streamlined as we recognize what we need each other to do. We have a clinic appointment with biopsy tomorrow, followed by a post-op appointment with the surgeon. We are hopeful Jodie's staples and stitches will be able to be removed. After this we will be moving to every other week follow-ups. Jodie will continue to be considered on "quarantine" as the doctors have all instructed to keep her suppressed immune system as seperated from whats going around as possible.
God bless and thank you all for your support
P.S.
Some folks have been askign for the video of my new heart beating in its transport box. You can see a video of it in action here. Warning, if you're squeamish and/or don't enjoy seeing organs doing their thing, we would advise passing on 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 ...
Happy one month anniversary ❤️
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