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

Tuesday, September 22, 2020

6 months!

 I had my 6 month clinic check-up today.  If we are going by date, tomorrow is actually 6 months post transplant.  If we are going by day of the week, it was yesterday.  Either way, 6 months!   Hard to believe it has been that long, and in some ways it seems longer. 

I decided to use a full sick day today for a few reasons.  First, so I didn't have to worry.  We got out of the house before 7:30, and were checked in by 8am.  It was a new nurse who checked me in this time.  My two favorite doctors were on today (both women, one an attending, one a fellow), so it was nice to know I would be heard and my ideas would be taken into consideration.  I voiced that I felt my current bp med regimine is not optimal, and that I would prefer to go back to something that had been working prior to the food poisioning.  They heard me out, and decided to try it!  They even got rid of one of the meds that I don't think does much of anything (I guess we will see). I was the first back to get the biopsy, and it went smoothly again.  I really appreciate them overloading my neck with lidocaine, as it makes it not too bad.  As has become my tradition, I took tylenol and an ativan right beforehand to help me stay calm. 

One of our main questions was about our siblings weddings.  The doctors stated that, even indoors, when everyone is masked the chance of infection with covid is extremely small.  They said I can do an n95, and don't have to do a full respirator (think gas mask), and the face shield I can do but they would not suggest doing alone.  They even said I can hug masked people!  The doctors were also open to the idea of us having smaller meet ups with folks inside as long as everyone was masked (me in the n95) and no one is actively coughing/sick.  This was a huge relief.  Additionally, it sounds like a few of the heart transplant patients have gotten covid and done much better than expected - to the point that they think some of our meds might be protective.  This is another huge relief. 

We walked out around 10am, and I walked up a flight of stairs in the parking deck! Then it was off to the Durham County Board of Elections to drop off our absentee ballots at the outside tent.  We voted! Do you have your voting plan set yet?  If not, I encourage you to figure it out. 

Then we went to a French bakery in that area and got some goodies. After that we headed home, and I crashed.  I took an impromptu nap on the couch for a few hours, then Peter made me a panini for lunch. 

It was a slow, good day.  I felt much more myself than normally on a biopsy day, and assuming everything goes well, my next appt will be in 2 months!  Thats crazy.

We attended a "surprise" Zoom wedding tonight.  The bride let me in on the secret so I could help her scheme and I could prepare a toast.  It was awesome.  Congratulations Stephanie and Cameron!  

I also got my flu shot in clinic today, an I'm running a very low fever (just over 99) and feeling a little achy.  I'm taking that as a good sign that my immune system can mount some response.  I'll keep an eye on it just to make sure thats all it is.  And the flu shot is a component vaccine, so it can't give you the flu.  

Happy Tuesday to all! 

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