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, February 26, 2020

Things change, things stay the same

Today was my first full day back at work in the office (I worked from home yesterday). It felt good to get back in, and today was my med/psych clinic day, which is my favorite day. I was able to get through email by the time my first patient arrived. After two sessions, it was lunch time. I ate lunch with my coworker and filled her in on things. I then had a free hour before my next patient, and as I was doing notes my email alerted me to test results in mychart (the online patient portal). As I checked the lab results and went through things, it struck me as a little odd to be looking at the results while sitting in the office. Even though my health has effects on my ability to work, in some ways I guess I had compartmentalized the two.

In terms of planning for being out for the surgery, I have already told all my long term patients about needing transplant and giving them the option to stay with me until I'm out, then bridge the time with one of my colleagues, or just switch to someone else now, or whatever else they prefer. 4 of my regulars have already said they will stay with me. While I really enjoy working with my patients, I also let them know that if they felt like transferring made sense, I would fully support that as I want them to get the care they need.  I can imagine that the stress around having your therapist go out on leave suddently, especially when you yourself are dealing with a chronic illness, could be a lot. One of my patients, who in a lot of ways reminds me of a young me and I really enjoy working with, decided it's best to switch sooner instead of waiting. When the patient told me, I had a moment of being really sad. I of course didn't let the patient see that, and I think it makes a lot of sense given the issues and the potential stress of them seeing what is happening to me.  But it still hurt a little.

I think I've done a really good job about being logical and planning things, and while intellectually it all makes sense, it still hurts that I have to be offering this.  I'm not hurt that my patient made the choice, but I guess it's just really hitting home that things are changing.  I was hired a little over two years ago to work with med/psych patients, and while I've done that, it is literally only this week that I've fully had my clinical time with this population.  And the first week of that, as I've gotten a really great caseload of patients who I care about, I realize that it is going to change and that even though fom a clinical skill standpoint I may be a great fit for someone, my personal health situation may make it so that I'm not the best person to work with them right now.

In some ways a lot of things are the same, but this is also showing me how much is slowly changing - and making me realize that at some point, it all quickly will.  I feel both ready and at the same time completely unprepared for the changes that are coming.  
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