A lot of work goes into healing, I'm learning. Today is a good example. Other than medications and taking care of myself, I had to go get labs drawn to check on how I am doing. My alarm went off at 7am and Peter brought me a Tylenol. I stayed in bed a little longer than I should have, then got up and ready. I made myself a cherry, peanut butter, cherry juice and milk smoothie (all about the protein), had my morning meds exccept for the one we were checking the level of, and we went to the lab. I had tried to call beforehand but could not get someone on the phone.
Peter went in with my lab slips, ID, insurance card, etc to check me in and see how it works. They were ok with me waiting in the car until it was time to get my blood draw. When it was time, I chose to walk holding Peter's arm versus bringing in my 'chariot' and having to clean it. The walk was not that far, but without the chariot it take a lot more energy. They were able to draw the labs and then I got home. Of course I was hungry again, so I had a chobani flip. After that I was extremely tired, so I took a nap. I timed it so I could eat with Peter around noon, when he takes a work break. This also meant extending the time between tylenol doses, and I was happy that with moving it out, while I did feel a little discomfort at by the time I took another dose, I did not have any pain. Obviously, if I don't need the medications I should not be taking them as even too much tylenol over time can cause problems, but I also need to make sure I'm not stopping too soon and getting pain. I'm feeling good about navigating this. I made sure to take my pills with milk - trying to get in all the protein and calcium that I can to help my bones and muscles heal
I had a large lunch of soup, then went to put up my feet and do a little reading/ catching up with people. Not even two hours later I was really hungry, and had some cheese and crackers. Lounged on the couch with the pets.
Our next door neighbors love Stella, and they offered to take her for a long walk. While they did that, Peter helped me to shower. Basically, I can't get any of my wounds wet, which is my entire chest area. So I can only clean from the waist down fully, my back, and then arms/armpits, and some of my stomach and sides. We have to be careful to keep the incisions clean and dry. Since my legs and feet are so swollen it is hard for me to do a lot of things, but between Peter and the new wand shower we were able to get everything clean while keeping certain things dry. The new shower is working great for this - I can sit on the bench, hold the grab bar, and the shower wand is great for maneuvering around the difficult areas.
After the shower I felt like I needed some exercise, so we did a little walk across the street, down a few houses, then up to the corner, crossed the street, and back. We stopped in our neighbors yard and got the dog back. Not to worry - we kept our social distancing, and brought clorox wipes for Peter to wipe down the leash after hand off. Then it was back home for my 5pm pills. After taking those, I realized I was hungry again (notice a theme here?) and decided on a small bowl of popcorn.
Now Peter and I are just relaxing for a little bit. I expect that we will have dinner in the next few hours, and then I'll need another snack before bed. The doctors had said that my appetite and my need for calories would really be increased these first few months out of the hospital as I heal, so I'm trying to honor when I'm hungry but also be smart about what I'm eating. For the first time in years we have half gallons of milk in the house, and I'm really trying to make sure that everything is at least moderate if not low sodium while also being high protein. So far so good.
I also figure since the calcium and protein is so important, ice cream and cheesecake at night is a reasonable idea, right? I'm really happy that we made all those soups and prepped a few meals before I went in the hospital or I think we would have some issues given the grocery store issues with the pandemic. So far we have not had a problem, and we are starting to think more long term about how we can/should get some of the food we will need. The local farmers market down the road from us is open for pre-orders with pick up, so we may do that, but luckily there seem to be a lot of options. I've ordered a few things online that I like to have that aren't necessitities but are comfort foods, and we can figure the rest out as we go.
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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