Today has been a day of waiting. Yesterday, it became clear that Peter has been running himself a little ragged, so I had him stay home instead of coming back in the evening. For today, we decided that it made sense for him to just work from home today, and then come this evening.
I ended up waking up at 6am after they did vitals, and I put up the back of my bed to sit up and read. I finished a short science fiction book, then got up to sit in the chair. While there I did a crossword puzzle, scrolled facebook a little, and had some yogurt. I made a few calls since I was feeling more like myself, and then they brought breakfast and my pills. I went for a lap around the unit, which tires me out. By 10am I was tired again, so I layed down for a nap and didn't wake up until noon. Unfortunately I missed rounds, but if it was anything important I'm sure they would have woken me up.
I was back up and in the chair, and decided to putz around on the ipad for a bit. Eventually this got boring, so I turned on Pandora and listened to music while I started one of the paperbacks I brought with me - "The Nordiac Theory of Everything: In search of a better life". My cousin Liz got me this very cool subscription box, the Wordy Traveler, for my birthday that gives a travel related book and some items from a region each quarter. The first box was the nordic countries, and I'm enjoying the book so far. It is written by a Finnish women, and given my love of Finland and many friends there, its interesting. One of my favorite detective/mystery novel series is a Finnish writer too. I'm not gonna lie - reading about the universal health care, paid time off when you get sick, etc is definitely making me jealous right now.
I got a few phone calls later in the day. Around 3:30 I asked if someone could walk with me around the unit, but no one was available. Because of concerns with falling or other things going wrong, they don't want you to do it by yourself. After an hour plus of waiting I decided to just do some 'wallking' around my room - at least it is large enough that I can go a good 5-8 paces before I need to turn around. I've been joking that I have the "studio" room, but really, it has a little desk area, a couch/bench area, a chair, and the bed, plus a bathroom and a seperate sink and some built ins. This room is really nice from hospital standards, and I'm glad that I can at least have a little change of pace- lay in bed, sit in chair, lounge on couch, sit at desk, etc. It makes being in one small room seem less monotonous.
Peter is coming soon. The doctor said that I can have anything I want to eat, and one thing we did not have time to get before I came in with miso ramen. Peter is picking it up and then will spend the evening with me. He is also bringing me some more underwear and comfy pants.
I'm mostly just trying to stay out of my own head.
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
Thursday, March 19, 2020
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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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