It has been 6 weeks post transplant.
Jodie: We had a long day in clinic yesterday, and everything is looking good - medications are were they need to be, no signs of rejection, and I'm healing well. Multiple nurses/other people who work with heart transplant patients made comments yesterday that I look like I am much further out from transplant that I actually am, which is kind of cool. Peter and I got to talking about how different things are already. We both have different things we have noticed as this time has passed. We thought it would be interesting to compare some things we are noticed since surgery, to how they were before surgery.
Peter: Even going on walks with Jodie and Stella has changed dramatically. Over the past few years, Jodie and I have done a few short hikes and long walks with the dog, but the pace was always slow, we needed regular breaks, and we needed to pack water and snacks. Just before Jodie went in, she had difficulty with even short walks. Now that she's out and six weeks past surgery, she books it on our walks... She doesn't have to tell me to slow down at all. I carry a folding stool for her since we still need to pause occasionally, but for less time and less often.
Jodie: It's been like night and day as to how much I can do. For years now, any time I've tried to do any type of exercise, I've been stopped either because I was short of breath/out of breath (by walking at a brisk pace), or because my heart was working too hard and could not pump enough for me to have the energy. While I still have spurts of energy and then times I'm more tired, my heart isn't stopping me at all! When we go on our walks, I do sometimes breath heavily, but I have not gotten out of breath to the point of needing to stop once. Right now it is more my legs feeling sore, for lack of using the muscles as much daily, that is stopping me. The other thing that has surprised me is how quick, in some ways, the recovery has been.
Peter: Fortunately, Jodie has been able to pick up doing a lot of the house stuff as long as I can help with some of the heavy things or things out of reach. Unfortunately, I will have to do the cat litter for as long as we have cats (and there will be no cats after these). But that is a small price to pay considering all of the amazing things that have come and will come from the miracle of this second heart.
Jodie: When I get into bed at night I realize that now I can again get in multiple ways, and if I'm not comfortable I can move myself to re-adjust and get into a better position. Just 3 weeks ago I could only get in one way, and either had to get all the way up or have help to re-position. This is the same with getting up and down from sitting, being able to bend over, etc. I still shouldn't lift anything really heavy, but I can move some things that used to strain my chest. While I know that this has in some ways been a gradual change, it also feels like it just comes on really quickly. When I'm awake and have energy, I feel fully like myself and sometimes get restless at being at home without a ton to do. And then I do the chores I can, some stuff on the computer, maybe some sewing, and next thing I know I'm tired. Not really needing naps anymore, but still needing rest times. This dichotomy of feeling awesome and then feeling more tired reminds I'm healing and need to be patient. But the times of feeling awesome are really hopeful, as I am imagining that that could be how I feel most of the time once I'm healed.
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 ...
You have done so well! You two make the perfect team-we are so happy for you💗
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