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, September 19, 2020

Moving quickly

It seems like things are moving more quickly - time (how is it almost October already), the days (mostly because of so much to do for work), how quick I can walk (yay).  Things are moving more quickly, and yet it still seems like sometimes the days are really long. 

We have settled into a bit of a pattern.  Peter wakes up before I do, but around 7:30 he checks to see if I'm going on a walk with him.  The vast majority of days I say yes, and I get up sometime within 10-60 minutes, take my morning pills, and get ready for the walk.  We take Stella, and our normal route is about half a mile.  We've noticed that it doesn't take quite as long any more.  Then we get home, Peter gets to work, and I make myself tea and grab something for breakfast, then finish gettting ready for the day and get started working.  

We have incorporated the farmers market into our schedule, and its nice to be able to go out Saturday mornings.  Because of covid, many of the vendors are offering pre-orders during the week.  We tried it this week, and it was nice to get things without them being sold out.  Planning to make beef stroganoff this week, and do something with the lovely patty pan squash I found last week.  That same vendor had small pickling cucumbers, and I got about 3lbs last week.  I was able to sterlize 6 jars on Wed and make the pickles on Friday.  I still have a few sweet dill jars, and one hot dill jar, from last year, so I decided to do savory.  I made 2 jars each of dill and garlic, dill, garlic, and shallot, and dill, garlic, shallot, and basil.  Last year I tested a bunch of flavors with quick pickles, and if I remember correctly these were my favorites.  Either way, it will be nice to have savory pickles too. 

We've been getting more information about our siblings weddings, and I finally got up the courage to ask my team if there's anyway they feel like it could be safe for me to attend.  I was shocked when they responded that they think it could be possible, if I wear a respirator with face shield, the other guests are masked, and we stay distanced.  I have clinic tuesday and will get more information, but I'm hopeful.  The nurse who is assigned to me said that, basically, the whole point of getting the transplant was to be at family events like weddings, so they want to see if there is a safe way.  Of course, theres still some doubt on my part because it is a risk, but I also do trust the science.  Obviously things could change as it gets closer to the weddings, but at this point I'm hopeful that we can make it work. 

Peter and I decided to sign up for Stitchfix after talking to our friend, and we both got our boxes this past week.  It was kind of fun seeing what someone picked for us, and we each decided to keep two items.  I'm not sure that we will stay with this long term, but we are both going to give it another month.  Both Peter and I tend to be clearance/bargain shoppers, so its weird to pay full price for something.  

We got our absentee ballots and the plan is to drop them off at the Durham county board of elections in person on Tuesday.  I felt pretty emotional voting for Biden/Harris, and hope that they get elected so that a plan to get covid under control can happen (among other things).  I'm saddened by the news of the passing of Ruth Bader Ginsburg, and feel a strange mix of emotions overall.  

I was finally able to focus long enough to edit Grandma Neukirch's Storyworth (Storyworth is a company founded by one of my Dartmouth classmates.  You pay a fee, and then pick questions to be sent to a loved one every month.  At the end, it gets turned into a hardcover book.  I highly recommend it - we did one for my grandpa last year).  One more round of editing, and then we can send to print.  The plan was to do that in February, but it got sidetracked with everything going on.  

I completely get that covid fatigue is settling in.  But please stay safe.  Wear masks around other, especially indoors.  Be wary of going to restaurants indoors or big family gatherings - that is where a lot of cases are coming from now.  We are doing socially distanced, mask wearing, outdoor meetups with a few friends in our yard.  Our setup for that seems pretty good.  

This coming tuesday I have a clinic biopsy, and wednesday marks 6 months post transplant, which is incredible.  I'll keep you all updated as to how things go.  Assuming the appt goes ok, from there I go to every other month appointments.  That seems crazy to me! But also nice to not have some much time related to medical things. 

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