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

Tuesday, May 19, 2020

8 weeks post transplant

Today is my last every two week visit, and then it goes to every month.  I decided to try the clinic biopsy again today - it really wasn't pleasant last time, but I was also only 3 weeks out and hurt all over at that time. I'm hoping it isn't so bad today - plus I brought pain meds just in case. Not having to go to the Cath Lab may save us hours today, and I won't get IV anesthesia so I'd be able to drive (which could be important down the line). 

We woke up a little early, and I was able to have a good breakfast and cup of English breakfast tea while reading a little. It was nice to be able to actually eat something. I brought with snacks for later, but it's good to feel full. I did my morning bp, recorded it, and then we got everything into a bag and headed out.

Since I've been walking so much better and longer distances, we decided to try my walking to clinic today. Worst case I sit down and we call for a wheelchair. So we got to the hospital, through the covid check station, then I took the elevator up a floor and I walked over. Lab draw wasn't bad, we got back to the room, vitals were drawn, and I took my meds. After meeting with the nurse coordinator, I went back for biopsy. It was much easier this time - still not fun, but minimally hurt and I was able to tolerate it a lot better. It's amazing what 5 weeks of healing does. We are able to discontinue one medication, and simplify taking a few more. After the biopsy I met with the doctor, who said to give it another week then I can full on shower! Woohoo! That will simplify things. We headed to the pharmacy, then we're back in the car and on the way home by noon. I was able to walk it all and didn't feel LL tired immediately afterwards.

We did a quick curbside pickup of baby quilt fabric from Joann's on the way home (yay projects for friends having babies), then it was lunch time. It was a quiet afternoon, and I ended up needing a nap. Had a low key evening and finally finished flipping the rest of the masks right side out and pinning them for the final stitches. Looking forward to being done with masks.

So take homes at week 8: I'm healing well, I need to be patient with this process, I'll most likely go back to needing naps as I do more, I can almost fully shower safely, buying fabric for quilts online is harder than doing it in person, Peter is awesome and supportive and I'm really lucky to have him in my life, and there is still a lot of time until I'm fully healed. 
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