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

Sunday, August 9, 2020

Humbled

 I had a hard time getting to sleep last night.  I'm not sure if it was one thing, or a combination.  There is a computer monitor in my room, and the screen saver is a set of photos that cycles through and made the room really bright.  Finally, at 2pm, I asked if they had an eye mask, and luckily they did.  I got to bed fairly quickly after that, but was woken up a few times for vitals before morning.  I just kept my eyes closed and stuck out my hand for the pulse oximeter to be put on a finger, my calf for them to put on the bp cuff, and opened my mouth for them to take my temp.  Needless to say, I did not get up too early.  It always surprises me when the staff is so surprised that "you haven't eaten your breakfast yet" and it is not even 9am yet.  I got to it eventually.  

I got taken for an echo, and the doctors found me over there.  They found some leukocytes, which are a type of white blood cell that indicate there was in infection, in a stool sample, so we know I had some type of GI infection.  I've not had a fever in over 24 hours, and the other symptoms are much better too, although not completely gone.  I'm back to being hydrated so my bp has steadily been increasing, so they have started back some of my blood pressure medications. 

The question is, of course, what caused the infection?  We can't really find out, since as soon as I got here they started broad spectrum antibiotics after taking blood cultures.  But in talking through it with the doctor, she thinks it may have been one of the fruit cups I had this week.  I had been craving fruit, and since they serve mandorin oranges in juice at the hospital on the immunosupressed menu and canned fruit is ok, I figured that fruit cups would be too.  One of the rules of thumb is that the more processed something is, the safer it tends to be, and the fruit cups are shelf stable until 2022, so I figured they were ok.  I ordered a handful of types for our last grocery pickup, and had a few this past week - pineapple bits, tropical fruit, and cherry fruit salad.  The only other thing I can think of is that I have been making cold brew iced tea in the fridge, and on double checking it looks like all tea should be made with boiling water. 

So basically, I'm humbled.  That something potentially as small as eating a fruit cup could cause this much trouble.  And not only that, but that in a mere 12 hours I could go from feeling pretty tired but otherwise fine all day, to the point where I'm so dehydrated that its dangerous.  Peter and I have been careful with our food prep, but have not been quite as diligent recently as things have been going so smooth.  This is a good reminder that we need to stay vigilant, even though it is hard. It also occurred to me that if a GI infection could do this much damage, what would something worse, like the flu or pneumonia do to me?  I've been saying with relative confidence that if I caught covid, I'd be likely to die, and after this, I have no doubt - my body is simply not able to fight off infections due to the immunosuppression.  Something I've known intellectually, but is really humbling to really know after going through it. 

So please stay safe.  Wear your masks.  Socially distance.  Don't have large gatherings, and if you do wear your mask.  It sounds like I might be allowed to go home tomorrow, so I'm praying that is the case. 

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