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, February 23, 2020

Nutritious, Delicious, possibly Treacherous

I went with Jodie to the appointment with the nutritionist this past week and it was a lot of information to assimilate. Due to being immunosuppressed, she will need to be very careful to reduce risks of food-borne infections. From how I understand it, after the surgery she will be on multiple medications - for the rest of her life - that will purposefully suppress her immune system so that her body does not attack the transplanted heart. As the heart would be detected as an intruder, her immune system would  attack it and that would be bad.

Some of you may know of the neutropenic diet; however this is thankfully not quite as strict. Essentially, all of her food will need to be thoroughly de-contaminated before consumption. The easiest way to do this is to cook everything, but we will have a little flexibility with fresh fruit and vegetables that have been very carefully washed.

From what I understand of the biology (admittedly not a lot beyond "cells are squishy"); bacteria can grow on almost any exposed surface, much more quickly with an energy-source, i.e. food. In order to mitigate the risks of bacterial growth, we will need to be very careful to not let her food become contaminated between preparation and serving. One of the things we are going to need to get used to will be when serving meals with many other people, Jodie will need to serve herself or be served first or she won't be able to eat.

Below is a list of some broad-strokes don't do items - with some examples of how they apply to our situation.

  1. No buffets - high risks of the food being contaminated by other people and because it is sitting out for a long time
  2. No raw meat - raw sushi, raw oysters, and rare meat not recommended
  3. Nothing unpasteurized - most goat cheese, some other cheeses, some juices and ciders, and raw/runny eggs (fully cooked with firm yolk is ok; or pasteurized eggs)
  4. Nothing fermented/pickled - pickles, miso, those yummy eggs in ramen, sauerkraut
  5. No cold meat - lunch/deli meats, lox
  6. No nuts/seeds in shells - nuts and seeds will need to be shelled and roasted
  7. No herbal products - can affect some transplant medications in unexpected ways
As mentioned before, none of this was too surprising; however there were some items we did not expect (like no pickles, miso, or eggs over easy), and some things we knew about but Jodie is dreading not being able to eat (sushi, oysters, raw cookie dough). Additionally, Jodie is going to need to continue with her current low-salt diet: salt makes you retain water, which means the heart needs to work harder. 

So in the coming however long it is until transplant, we would love to be able to make the most of the foods that she won't be able to enjoy after the surgery. If you're local, feel free to let us know if you want to go out to eat for some of these foods that Jodie is most likely to miss not being able to eat.  

1 comment:

  1. I've seen edible cookie dough in the grocery store! Like, explicitly labeled for raw consumption. So maybe Jodie won't have to give that up!

    ReplyDelete

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