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

Friday, June 19, 2020

Happy Anniversary

Yesterday marked the 4 year Anniveresary of when Peter and I got married.  In some ways it feels like much longer.  I was reflective yesterday, and so thankful that life brought us together.  I cannot imagine these last few months (and years) without him.  I am so blessed to have such a thoughtful, caring, supportive partner (and handsome and smart too!).  As we had been talking about how to celebrate, it was somewhat hard because we obviously can't go out.  But that wasn't going to stop us!  We decided to order in a nice dinner, and found a yummy looking Spanish restaurant with tapas and paella.  We put in an order for pick up.  While Peter went to get it from downtown Durham, I dug out the colored napkins we used on the tables at our wedding, the woven center pieces, and a vase, and I set up our table with our nice dishes to be special.  We have some pine scented candles, which helped bring in the Maine vibe as well. The food was delicious.  After dinner, we looked through our wedding albums and digested a bit. Then we had some Eli's cheesecake for dessert - not the same flavor as what we had at the wedding, but still really tasty.
 
Then we turned on the song from our first dance, Feelin' Good by Micheal Buble, and we shared a dance in the kitchen.  We have danced a few times post transplant, but this is the first time Peter didn't have to be careful with me and I was not sore from the pulling or movement.  This was exciting, as I am not noticing the improvements as easily nowadays since things have evened out. I can't wait to be even stronger, and to eventually be able to swing dance again - both lindy hop and blues! Of course, it will be some time until that is safe in a crowd because of covid, but at least Peter and I can practice.

It is also our two year Anniversary of owning our first home.  When we were looking, we had gone back and forth between one story and two story houses.  We both really like having two stories, but I had wanted a one story one knowing that transplant was probably coming soon.  I am really glad we picked this house, both in that it is one story, and because it has so many different spaces we can be in.  I think that if we had less space Peter and I might be getting in each others hair a little too much during quarantine.

This week was a good week.  I had my second cardiac rehab on Monday, and it was a little better than last time.  The person I worked with was more stringent about wiping down machines, and she had me do a lot more - a total of 35 minutes of exercise, 20 of it pushing myself.  Since Peter isn't allowed to come in, he brought his work computer to set up in the car, and went to get coffee.  He picked me up a bagel and cream cheese so I had something to eat when I got done, which helped.  I then went home and worked for a few hours, had lunch, took a nap, and then got in a few more hours of work.  It was my most productive work day yet, and if felt good.

I've started pushing myself a little more this week, and am working on getting my endurance up in terms of working and exercise.  I still have days that I feel more "fuzzy" and it is hard to concentrate, but they seem to be getting to be fewer and further between.   I am starting to think about what I would be doing, 3 months out, if there was no quarantine, and get more on a schedule to take that into account.  As I'm doing more I am needing a rest/nap in the afternoon, usually around 1/1:30, but my team said they would rather I push some and need the nap then not push.

My body is still healing a little, but its getting closer to being  not sore, at least my chest area.  Once it gets to that point I think I will be able to relax a little more and feel more comfortable with moving more. I have lifted slightly heavy things without a problem, which is good.

When I had my last open heart surgery, I remember that at some point, within a week, I really "turned a corner" and went from being more frail to more strong.  I don't think the same process is working here, but looking back a few weeks I think I have turned at least part of the corner.  Talking to one of my friends who had a heart transpalnt a few years ago, he said he still needs naps at times, so I'll just have to take that in stride.

While I'm worried about covid and it has thrown a wrench into a lot of our early plans, I'm also grateful at being able to be home and work from home, and being able to have Peter work from home so he is here if I need anything. Please stay safe everyone - wear a mask around others, if you are going to be around other people try to do it outdoors and socially distance/mask, and stay vigilant.  We are not through covid, which is surging here in NC and other places, and I think its been easy to get lulled into thinking things are better.

Looking forward to when we can be around others, and hoping that covid dies down so we can enjoy attending the weddings of a handful of our friends and family who are getting married some time in the future (two have had to be rescheduled already).  I cherish our wedding memories, and hope that our loved ones get to have the experience they want, and the love and support we felt 4 years ago.
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