As I'm going to be here until they find me a heart (which hopefully is not too long, but could be weeks), I'm trying to find a new "normal". For those of you who aren't very familiar with how hospitals work, the workers are here in shifts. At Duke, all nurses work for 12 hours - either from 7am to 7pm or vice versa. Most nurses here work three 12 hour shifts a week. The doctors have slightly different hours, and they tend to be working in the hospital for a full week at a time. Of course there are a million other positions, but those are main ones that make sense to talk about for my schedule.
Since the new staff comes on a 7am, usually around 6am the nursing assistant will come in and get my vitals, weight for the day etc. A little after 7am the new nurse comes in and I meet them. I'd like be getting up around this time, and yesterday I quietly read in bed for awhile until breakfast came. Today I was sleepy so stayed in bed until 8am.
Then I have breakfast, and most days Peter arrives around 8am and sets up in the corner to start working. As I wake up, eat, and start doing things for the day, he is being productive for work. Once I'm awake enough, Peter is helping me to wash up with a washcloth and a bin of soapy water. Given that I have an IV and a PICC line, I have to be really careful not to get that wet, so no full showers. However, even being washed makes me feel so much more human. Then I can change my bottom half (need to keep using the gown on top) and I feel more awake and clean.
I'm supposed to try to move around as much as possible. A lap around the unit, which is triangle shaped, is 1/18th of a mile. I have been able to do 1, at the most 2 laps at at time. My goal is to do at least 4 laps a day. We did a lap, and then I sat down with my laptop to try to finish our taxes. I don't have a ton I need to do, but am trying to stay busy. I have a few paper books, I have my kindle, I have an ipad (not sure I need it) and a few puzzle books. I'm trying to do something that keeps my mind working, and isn't just scrolling facebook. I'm not even turning on the tv
Some time in the morning the heart transplant team comes in to round, and they update up on what is going on. We like Peter to be here for that so I'm not having to relay information, and so he can ask questions too. After they leave Peter heads home to work the rest of the day.
Around noon-1 they bring my lunch tray and I tend to eat around this time. In the afternoons I've been getting tired and usually take a nap. The afternoon is variable but usually pretty quiet.
Peter usually comes back around dinner dime. In the evening, after dinner, I have to do a CHG bath (with the wipes) and put on a new gown. I use that as an opportunity to change my telemetry leads each day and get less sticky. Then, if Peter is here, we try to have some quality time. Last night we played a game, then I got into bed. Before bed, Peter and I have been reading Harry Potter and the Sorcerers Stone. We started when I was in the ICU and could not see each other. Now we usually we will go back and forth, and try to do a chapter a night. After we finish, Peter tucks me in and heads home. The last few nights have been a little later than either of us has liked, so our new goal is to be done with this routine by 9pm so Peter can get home and get to sleep at a good hour.
It is much the same each day but I'm finding small spots of different things. There are times I'm a little bored, but I remind myself of all the options I have. Overall, I feel like myself personality wise but I have much, much less energy than I used to. Getting up to walk to the bathroom and back can be enough for me to feel slightly winded. I'm just trying to pace myself.
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 ...
It’s so sweet to see how you both take care of each other ! Your smart to establish a routine that works for both of you. You two have great coping skills. Good job on all those laps around your unit Jodie! I like that you listen to your body-when you are tired you rest. More of us should do that. Sweet dreams and many prayers for getting a healthy heart quickly :)
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