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, August 10, 2020

One more day

 I had trouble getting to sleep again last night, which was somewhat surprising to me.  Although at home, I have been having the same issue, so maybe I shouldn't have been surprised.  I got up, went to sit in the chair and read, and pressed the nurse call button to ask for a cup of decaf hot tea.  They didn't have any on the floor, but the NA brought me some crackers to munch on.  I read for about an hour, and afterwards was able to get myself to sleep.

This morning I had to wake up at 6am, as I realized too late last night that I did not order breakfast.  I would have still gotten a tray, but who knows what would have been on it.  I woke up, got my order in, and then couldn't really get back to bed.  I did my daily crossword puzzle on my phone, then wet my hair so it would re-curl.  The NA brought me some bath wipes, and I got cleaned up, which felt nice.  These were different wipes than the ones I had to use before and after transplant, which made me feel sticky.  They have a nice scent to them, and it was nice to feel cleaner. 

The doctors came and rounded, and they have not gotten the results of my blood cultures back yet - which could mean that nothing grew.  The problem is, they can't really send me home with antibiotics without knowing which ones are appropriate.  So I'm here until tomorrow.  I'm bummed, but I get it.  They were pleased with how I've been progressing, and we went over a lot of different small things in regards to once I'm home.  The doctor let me know that once I hit 6 months post transplant, some of the meds get lessened, which should help with side effects, and then even more so at a year post.  It can't really come fast enough. 

After they left, I was cleared to walk, so I did a few laps around the unit.  I ran into my old heart failure doc and we had a nice chat in the hallway.  I really like the transplant team, but I do miss my old cardiologists.  This one is the person who really put everything in motion, went to bat for me, and helped make everything happen, so it was really nice to see him.  

I then went back to my room and read for a bit.  Given that it is a work day, Peter worked from home this morning and came in a little later.  I had to send a message to a patient I was supposed have a therapy session with at 1pm today to reschedule, and I asked a colleague to call the patient since they had not read the message this morning.  At least I shouldn't have a problem for my wed patient, as I plan to be home by then.

I get IV antibiotics every few hours, but that is really the only thing keeping me here.  I can't wait to go home. 

Peter came to keep me company in the afternoon, we had dinner, and went for a walk.  I got in my  half mile for the day.  As we were finishing up, the NP came in and said they identified the bacteria to blame, Campylobacter jejuni.  It is mostly in poultry, and takes 5-7 days to make you sick.  We made cornish hen last Monday, and it took way longer to cook than expected.  I'm guessing that this is the culprit, especially since I had the leftovers on Thursday night, which wouldn't have helped. Good news is now they know which antibiotic to send me home with.  Bad news is I have to stay tonight.  But hey, I get to go home tomorrow and we have answers.  

I also got to look up the bacteria, and reading about it was nerdily cool, and brought me back to my days when I was studying bacteria.  Funny enough, I remember the name but didn't remember a ton about what it does, probably because in lessons it wasn't highlighted as much.  My college professors approach to bacteriology was to the effect of "this is the bacteria, and this is how it tries to kill you" approach, with some smaller info on bacteria that make you do interesting things - like how there was once a Listeria outbreak during a circus at Dartmouth because the performers ate potato salad left in the sun, and then started projectile vomiting on the field during the show.  I guess c. jejuni wasn't interesting enough, since it just causes diarrhea and is often a one-off infection, versus causing an outbreak like a lot of others. 

Anyway, I'm really happy to be able to go home. tomorrow  Peter and I watched another episode of the Great British Baking Show and I'm going to read a bit more tonight before I turn in.  

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