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

Wednesday, August 12, 2020

Home sweet home

 Yesterday I got up fairly early, wet my hair so it would look ok, and then got up to sit in the chair.  My back was starting to really bug me from sitting and laying down so long.  The NA was great and brought me warm bath wipes, and I got clean again. 

My breakfast came, and the medical team did rounds just before 9.  They told me I could go home later that day, but I needed to do an IV of magnesium and one of blood (as I was anemic).  They went over med changes, and said it would most likely be around 3pm that I could leave. Peter and I were both delighted at the news.  After the doctors left, I got on my weekly therapy via video - As a therapist, obviously I believe in going to therapy myself, and its been helpful to process things with more of a "neutral party" through this journey.  We got about half an hour into the session, and then my nurse for the day and the trainee nurse with them came in to give me meds.  Seeing as there was a trainee, which would require my attention, we cut our session a little short.  It was a good thing, as it took 30 minutes between the beginning and getting all my meds/the IV started. 

I decided to go for a walk on the unit, and did a half mile, figuring that since I was feeling better, I needed to try to get into my normal routine as much as possible.  Then I came back and sat in the chair and read.  Peter arrived around 2pm when the blood was done running, and then it was time to wait.  He had brought me clean clothes, and I changed into them.  Then we waited for the discharge paperwork.  It took a little over an hour, but we were free to go.  And they even let me walk out on my own, although the nurse had to go with us to make sure I didn't fall. 

We got in the car around 4, and then went home.  It was a lazy night at home, and Stella jumped up to cuddle with me on the couch, which she doesn't often do, so I could tell she missed me.  After watching another episode of Great British Baking Show, Peter and I headed to bed early. I think we were both drained from the day. 

Today, I got up around 9, leisurely had breakfast and did my weight/blood pressure.  They gave me so much fluid while inpatient I'm up about 10 lbs, so they restarted my diuretic which is good.  I then went to work, and other than a break for lunch worked 11 to 5:25 without a problem.  I had an unexpected therapy session when I called my Monday patient, who I wasn't able to see, and they were free to meet right then.  I also talked with a colleague who recently saw one of my old long-term patients last week, and we decided to leave it up the them.  I called that patient who decided to come back to me, which is exciting.  So now I have 4 patients I'll be seeing regularly, and 1 who is already back at college.  I can probably see another few starting soon, so I'm slowly getting back to it. 

We had a good ATLAS staff meeting, and it was exciting to have my intern for the fall (who also was with me all last year) join the meeting.  Things are slowly getting more back towards "normal", and things are figuring themselves out as we go. 

We didn't have much in the fridge so ordered takeout, and Peter was pretty horrified at how many people were eating in the restaurant - we will cross that place off our list.  I got in a large Instacart order for Peter to pick up tomorrow, so then we can get back to cooking. Tonight has been quiet and I'll probably go to bed early.  I'm just really grateful to be home. I'm also pleased that my gains from prior to this stint in the hospital seem to have come back already.  

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1 comment:

  1. UnknownAugust 13, 2020 at 1:16 PM

    Glad you are back home and feeling well!
    Love to you both. xoxo Aunt Elaine

    ReplyDelete

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