This has been an interesting week. I have been both more active and more sedentary. In a lot of ways I increased things I was doing, without realizing I was doing it all at once, and I felt it. I don't think that I did too much, but it definitely led to me being tired and needing more rests.
Overall it feels like an ebb and flow. When the energy is there I feel great and can do a lot, and then it hits me and I need to rest. What is interesting is how much video calls take up in terms of energy, as does working on the computer. Those factors are different than what I would have expected. I've found that is also affecting how much I want to talk on the phone. So it will be interesting to see how that moves along.
Days seem both long and full, and at the same time like not much is happening. Below are some random musings on things that have been going on.
- We no longer have a big tree in the backyard. We had a beautiful old maple tree that was unfortunately rotted down the middle, so we had someone come and take it down this week. It was amazing - in just over 6 hours the entire tree was cut down, and then it was a few hours the next day to grind the stump. We feel much more secure, especially as we could see how far the rot had gotten and there is a good chance that a big branch would have come down on the house at some point. Plus, we got to keep the woodchips and Peter mulched a few parts of the yard.
- My sternal wound is finally all healed! It took more than 7 weeks and some wound closure strips to help keep it together in a thin line, but the last little bit of my wound is finally dry, and there is at least a thin layer of skin. I'm going to give it a few more days to make sure its good, but that means next week I can take a real shower with the spray going over my whole body.
- Speaking of showers, this week I was finally able to shower 100% by myself, without needing any help. This is helpful for me physically and emotionally, but also means that Peter doesn't have to take away from work time to do this.
- I've continued to work on my mask-making. I have a little over 100 cut out and in various states of sewn. My goal is get them fully sewn by the end of next week and donate them. After that I'm going to take a break from the mask making, and move onto some other sewing projects.
- I have my last 2 week check-in on Tuesday and then move to monthly. This is awesome.
- I really love tea. Since I've been home, I've had more time to really enjoy cups of hot tea. I was running low on a few of my favorite loose leaf blends from Tealuxe, so I went online to buy more and realized that the Providence, RI store closed in 2019. I decided to buy from a local Chicago store that I had gotten some tea from at the Kristkindl mart back in the early 2000's. It is delicious, and I'm realizing that I need to make time for a leisurely cup of tea in my morning routine, even once things are more 'back to normal'. My favorites of the new teas are an English Breakfast tea blend, and a green coconut.
- Wednesday night we made red velvet cupcakes with cream cheese icing (box mix and cheap icing)... While limited by the amount of paper shell things, we were able to fill 48 minis, and 9 normal sized! All was fun and games until someone made the comment that the batter looked like ketchup... But seriously, they tasted fantastic. And I'm really looking forward to Peter making them from scratch next time. We decided that the red velvet would be enhanced by adding mini chocolate chips.
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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