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, July 31, 2022

Infusions, energy, and covid

 By Thursday night I had not gotten a good night's sleep for a few nights, so my doctors suggested a med to take before bed. It helped and Friday I woke up feeling refreshed and energized. It was a quiet morning, then Liz and I headed over the hospital for my infusion.  We got there early, and I let them know that I would probably need IV team.  When they brought me back iv team had already been called. It took about 2 hours for them to get there, but Liz and I chatted, she went and got us food, and then it was the 4 hours of the infusion.  We headed home after and had a quiet night in. I was able to walk to the infusion clinic, but was too tired to walk back. 

Saturday we slept in. I got a call in the morning that my labs came in, and the ones related to my kidneys didn't look great, so they decided to hold one of my meds. We played some board games, watched a movie, video chatted with friends, and just rested.  My energy has been a bit lower the last few days, but I am napping when needed and that helps. 

Sunday morning I woke up feeling short of breath. I figured this was because my lasix was held and I was holding onto water weight.  But since I had coughed a few times on Saturday, I took a covid test to be safe. Imagine my surprise when there was a very, very faint line in the test area. I grabbed another test and made sure to get a really good sample. This time as soon as the liquid hit the test line it turned pink. Luckily, Peter and Liz's tests were negative. Liz had been wearing an N95 the whole time she was here, but Peter and I immediately masked up. 

I called the transplant doctor on call, who told me that covid is running rampant right now and I was the 6th patient this weekend who had tested positive and that he was putting in a prescription for the covid pill. I found a lab test slot at the CVS, went and did that, picked up the meds, and then we came back and tried to enjoy our final bit of Liz's visit. We were more distanced, and washed our hands a ton, and were wearing N95's the whole time.  I had one actual N95 from when I was in the hospital, and I like how it feels so I ordered 40 of them on Amazon and they should be here tomorrow. 

So far I am feeling tired, a little short of breath, and I'm coughing periodically. Hopefully it does not get much worse than that, but the doctors have said to call if anything changes. The most frustrating part of this is that my tests tomorrow are all canceled (understandably). I'll re-test on Friday after I finish my meds. Peter and I luckily have a big enough house that we can each have a "zone" that we can be unmasked in that the other won't go in, and then other shared areas that we will mask in. I'm hoping that neither Peter or Liz catch this.  The best guess is that I caught this on Friday when I was at the hospital.  I was sitting in one place for over 6 hours, with my mask off at times to eat and drink, so it is most likely since otherwise I haven't been anywhere.  Plus, between my immune system being wiped out, my antibodies taken out, and killing my cells that make new antibodies, I had no protection, so much less exposure would probably make me sick in comparison to a normal vaccinated person.  I'll get my official PCR results tomorrow, but I'm expecting them to be positive. 

Stay safe all!

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