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

Monday, February 17, 2020

Dentist and Therapy and Quilting, oh my!

Today was a busy day.  One of the things I learned last week is that in order to be listed for/get a transplant, you have to be cleared by the dentist.  Why, do you ask?  Dental care is actualy really important for heart patients.  Mouths are pretty dirty, and cavities and problems can lead to infections or bacteria getting into the bloodstream, which can be really bad. I've actually had to take antibiotics before any dentist visit my whole life.  So in order to be cleared for surgery, you need a recent dentist appointment and no issues.  The dentist I had been going to down here (who I was not loving) could not get me in until March 7th, so I switched to the office Peter goes to.  I left work early to get a cleaning, and things are pretty good.  I need to get a small filling for a weird indent thing on the front of one of my bottom teeth, but they are doing that Saturday morning so I'll be good to go in terms of the letter and dental clearance by next week.

I then worked from home as I had a lot of calls for our coaching research study to do (I'm supervising some of the coaches).  After that, I had a little bit of time to work on a quilt for our bed.  I started quilting in college, and it is one of my coping strategies and favorite hobbies.  When we got married, I had a quilt I had made myself, and Peter had one I made for one of his birthdays.  We decided we should have one that was "our" quilt, and we bought fabric on our honeymoon in 2017, but I have not had the time since. One of the other things Peter and I did to get ready for this process was upgrading our bed to a split king.  The choice to get the split version was mostly because I like a soft bed and Peter likes a hard bed, and we couldn't find one that agreed with both of our backs.  It's a good thing it took me so long to get working on the quilt - otherwise it would have been the wrong size! We decided that we should also get the adjustable frame, so that once I'm healing it will be easier to get out of bed.  Fun fact - post open heart surgery, you aren't allowed to use your arms to push your body weight up (too much pressure on your chest), so you have to just use your abs.  It is hard to do, and the adjustable bed will help.  I was successful in finishing pieceing together the quilt top, and now just need to quilt the sides together and do the binding and we have a quilt!




Then my therapist came by for our bi-weekly appointment.  I have been in therapy a fair amount since going into heart failure, and I'm a big fan of it.  It helps to work through thoughts and feelings I'm having, and its good to have a neutral party to talk to.  This therapist is new (to me), as I decided in October it made sense to start looking, and to get in at least some sessions before things got crazy and before I actually get the transplant.  I'm liking her - and she comes to the house, so after surgery I won't have to stop when I can't drive since she can come to me.

At the end of today I'm feeling relatively calm and waiting for all of this to really "hit" me.  I have a feeling some time Thursday/Friday/Monday in the midst of all the tests and appointments it will.
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2 comments:

  1. TabathaFebruary 19, 2020 at 4:56 PM

    Beautiful quilt! Your talents never cease to amaze me! ❤️😘

    ReplyDelete
  2. Cathy ConleyFebruary 19, 2020 at 9:15 PM

    You got this. Sending lots of positive thoughts from Ethan and I

    ReplyDelete

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