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

Saturday, August 29, 2020

Friday Night Into Saturday Morning Musings

 Its the end of a work week.  I would say that this week is the first that I have put in 5 full days worth of work.  6+ days each day, and super productive.  That is exciting for me, as just a few weeks ago that was not possible.  My intern from last year started back for her last term, and its both been good to have her back, and also has been motivating to get more done.

I have a few big projects I'm working on that are exciting, and need to be done within the next few weeks, so that is also good, as once that happens then things will start to settle into more of a new normal.  

Tonight after work Peter and I did an online board game night with a friend, which was nice.  I also got to talk to my younger brother Shaun for a bit to hear about his engagement to Melanie and how he proposed.  It was good to hear him so happy.  The wedding is mid December this year, and again I am really hoping that coivd calms down significantly by then so there is a chance that I can be there.  All of this is so hard with being immunocompromised.  I haven't asked my medical team yet what they think, in part because I'm not sure I want to hear the answer just yet. 

I will probably be putting in a few hours of work this weekend as one project is so close to being done.  Otherwise, I have a baby quilt I should work on, and am in the middle of two books that are really good. 

I think my biggest issue right now if figuring out how to work exercise into my schedule.  Part of this is because with med changes, my bp is not as good as it was before, so I'm nervous to make it too high.  The other part is that I'm at the point where I actually am getting things done, an it feels a little like I missed my 'window of opportunity' where putting in the exercise would have been easy (which was when I started cardiac rehab).  I have found out that I don't need extra calories for healing anymore, and I definitely would like to lose some of the excess weight I've gained since transplant as that would help my lower back, my bp, and me just feel better. Weight gain after transplant is normal, in one study an average of anywhere from 7 to 18lbs.  I came home at least 20lbs more than pre-transplant, and its not super comfortable.  So that is my big thing that I'm thinking about now.  Since I know it is safe not be on more of a "normal" eating plan, and that I don't have to snack every time I think I'm hungry, I think that will help.  I do know that movement is going to be important, and the truth is that since I'm at home for work and everything else, there just isn't as much movement as I would like.  If anyone has ideas of good completely contact free "errands" or things I can do to get out and moving (now that the weather is better), I'm up for ideas. 

*******

I had meant to post last night and forgot.  This morning Peter got me up a little early, and we went for a walk at 8am with Stella around the neighborhood. He has been doing this daily around 7am for two or three months, and its been too early for me.  It felt really good to get up and moving so early.  Then we got home and I had my yogurt and tea for breakfast.  Peter realized that, being Saturday, the farmers market was happening just up the road.  I got excited, as that is one thing that I can safely do!  We grabbed our masks and headed over.  

The market was set up with the tents having 6 feet between them sideways, and much more space inbetween the fronts than usual.  They even had painted dots on the ground 6 feet apart for people to stand on.  Everyone had a mask on, and everyone was safely distanced.  Finally a slice of normalcy!  I got pretty excited.  We got some great finds - husk/ground cherries (its like a tomatillo with the husk, but is sweeter.  Still tart though.  They are delicious) a spaghetti squash and 3 small summer squashes from the first vendor, fresh made chorizo and bangers and smoked jowl bacon from another place, fresh monkfish and wahoo from another vendor.  We also got some spinach gnocchi and potato, romesary, and asiago pierogis.  I am beyond excited about cooking this week.  There weren't many veggies other than peppers at the market, and no leafy greens, but thats ok.  As much as I love farm fresh greens, it may be better to do store bought ones because of the extra level of washing involved. 

When we lived in RI and there was a year-round market (winter went inside), Peter and I would go every Saturday morning to do the bulk of our shopping, and then go to the grocery store later in the week for whatever else we needed.  I think we may revert back to that model.  We can get chicken, pork, lamb, sausuage, fish (first time I've seen them at this market) at the market with all the vendors there today, and there have been vendors with beef other times.  Since Peter and I both want to eat a little healthier, and we felt great when we used to get all our meat from the farmers market, it may be a good time to get that back into our rotation.  Plus it is one outing a week that I can actually do!

We will see what the rest of the day holds, but as of right now its only 10am and I feel quite productive.  We got everything put away, cleaned the veggies, and husked and cleaned the ground cherrites so they are easy to eat.  I even made some limeade to have in the fridge.  

Also, good to know that Peter and I got new phones, which don't work with Verizon.  We started with t-mobile and both have new NC numbers now.  If you haven't gotten the new number from us yet, reach out and we are happy give it to you.

Here's hoping you have a good weekend, productive if you so wish it be, but good either way. 

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