Yesterday after finding out about needing to go into the hospital tomorrow, Peter and I made a list of the things we were hoping to get done before I went into the hospital, and started to prioritize. On the list earlier in the week had been a trip to Ikea today, which is 2+ hours away, to get storage stuff for my craft room. The goal was to have it be a little less cluttered so it would be a comfortable spare room if someone needed to use the Murphy bed in there. Due to time constraints, we decided that was not super important.
Yesterday night after the contractor left, I started a load of laundry for the guest bath and our dirty towels. Then we went to Old Navy where I bought some clothes that will be comfortable in the hospital. Once I have the transplant, I will be on a steroid that will most likely make me gain a little weight, so I wanted to make sure I had some clothes that would be easy to put on and will still fit even if I do gain a bit. I got some comfortable pants, some tank tops, and some button up tops. When you are in the hospital for a heart issue, you are constantly hooked up to telemetry. This is a portable EKG, which gives the nurses a constant view of how your heart rhythm is doing. If something goes wrong the nurses see it in real time and can come help. This means there are stickers with metal nodes on them that the wires can connect to, and all the wires go into a box. It can vary in size. Usually (at least as of my last hospitalization), they rip a hole in the hospital gown near the front pocket so the wires can come through and you can put the telemetry box in the pocket. I decided to get some button up shirts that (in theory) I could run the wires through one of the gaps between buttons and put the box in the pocket (if it is small enough). Once I have surgery I don't mind being in a hospital gown, but if I'm just staying there and will be in for awhile, I would rather be in comfortable clothes. I also don't want to worry about if anything gets dirty/stained/ruined, so none of these clothes are ones I would be sad if something happened to.
Then we got dinner, followed by a Target run for some items that would allow us to meal prep (glass containers), lots of pet supplies so our friends helping out won't need to worry about it, some blankets for our bed since the quilt is not done yet and that allows us to put our current comforter in a guest room. After getting home, we were able to get two more loads of laundry through the washer, including all the new clothes. We headed to bed knowing it would be a long, packed day today.
We both woke up fairly early, so got another load of laundry in, headed out to breakfast near our house, then hit up the farmers market. After that we made a list, and picked up a few more things from Target, then went grocery shopping for meal prep and Peter for the week. We realized in the morning there was more to do than we would be able to, so we decided that since so many friends have been offering to help, it made sense to reach out and see if they were free. We had 4 friends come over, and we can't thank them enough. With their help we cleaned and tidied up most of the house, including dusting/vacuuming, washing floors in most of the rooms, organized the spare rooms so they are ready for guests, done over 9 loads of laundry (including yesterday) including all the comforters and sheets for the guest rooms, all our dirty clothes, and the slip cover for our couch. They also helped us completely clean the kitchen, the fridge, and our deep freezer, clear out things, and start meal prepping. So far a pressure cooker worth of chicken noodle soup is done (11 containers), beef barley soup (10 containers) and the Italian wedding soup is in the pressure cooker. We are going to us some of the leftover veggies that didn't make it into soup to put into containers with either chicken or pork, and we can freeze them for easy meals. With the glass containers that are oven, freezer, microwave safe, and dishwasher safe, it will give us a fair amount of time before we have to worry about cooking once I'm home. It was also good to start doing what will be required for food prep - scrubbing all the vegetables, being really careful not to use anything rotten, and making sure to keep things clean. I'm feeling confident that with planning we can do it, but it does take more time.
Now I'm relaxing as Peter is still switching loads of laundry. Tonight we need to do our taxes, put away laundry, and hopefully pack so we don't have to in the morning. I am quite tired and really startng to realize how limited I am, so I'm feeling more and more comfortable with needing to go in the hospital. Hopefully I'll feel a bit better.
We are going to go to sleep early since we "spring forward" tomorrow, then try to go to both church services, have lunch, and then head to the hospital. We will keep you posted. Once I am in the hospital, but before they find a heart, I will have a lot of time so may be posting a bit. After the surgery it will probably take me awhile, but Peter will be posting updates.
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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