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, July 19, 2022

Keeping calm

 Yesterday (Monday) was a bit long, as I did not sleep well. I had my plasma pheresis in the morning and then the final rat-g treatment in the afternoon, which led to a much needed 3+ hour nap. Peter was able to be here for part of the day, which was nice. I had a short PT consult, and they just suggested doing sets of laps throughout the day to keep moving. The great news is that since I can do the laps, I don't need to get heparin shots every 8 hours, which I greatly appreciate as I'm really black and blue from all of them. I worked on keeping calm with sewing, and was able to get all my sub-pieces sewn together. 

I got an uninterrupted 6 hours of sleep last night, which helped me feel much better. I was out of bed by 6 (vitals were at 5:30). I did my CHG bath (special antibacterial wipes they give me warm), brushed my teeth, and got ready for the day with new compression socks, underwear, and deodorant. It seems silly, but trying to do something "normal" is helping me to cope. My heart rate was still pretty high, and it went up into the 140's while I was doing my bath and then the 3 laps around the unit.  It did come back down to the 120's, where it had been, afterwards, but I was not sure what to make of it. 

I noticed that my PICC line had some blood seeping around it, and it was really sore. They called in a consult to take a lot. It is working fine, but we did a dressing change to clean it up and it feels much better. Then it was time for my 3rd day of plasma pheresis. The transplant team is wanting to do these 5 days in a row, but the pharesis team says they normally only do 2-3 days in a row and then you need a break. They think the blood around the PICC is because my clotting factors have gotten thrown out with the plasma the last few days. Due to this, I got back some donated plasma today to help even out my body. They took a blood sample to look at, and once it comes back we will know if they are doing two more days in a row, or if I need a day off to get a different med, then the last two days. 

Transplant has started to get me back on the meds I will go home on. They started me on a new med that will (hopefully) help my heart rate come down to a more normal rate. My heart is beating in a normal rhythm, just really fast, which is an indication of the damage. Since they antibodies have been removed and aren't attacking the heart, we are hoping that my heart will start healing and so some improvements. If this medicine works, then once I'm done with the treatments transplant will be comfortable sending me home. If my heart rate stays high, they will want to do a cath to look closer at the heart before I leave. Either way I would have follow up echo and cath/biopsy in 2 weeks to see how my heart is progressing. 

I did a good amount of reading today, and I was able to finish sewing the base of the sewing mat I'm working on! The staff seems really interested in my sewing set up and keep popping in to take a look.  It obviously still needs to be finished, but its a good start. Surprisingly, no one has commented on my little iron (thanks Sarah and Karen), and I'm hiding my rotary cutter except when actively using it.




We decided that Peter would take the dogs to doggy day care and board them tonight, with day care tomorrow as well. We're hoping that will give him some time to recharge too. He was here for hours in the morning/afternoon, and is spending the night and will be here tomorrow. It will be good to get some time together when he doesn't have to rush back to the pups.  My dad is also driving in and will be here tomorrow afternoon. I'm having everyone be super careful, and given my lack of immune system even I will be in a mask with visitors now. One thing the team did tell me is that once I get home, I have to be super careful for at least the next month as I'll be really, really susceptible to infections. 

I think I'm doing a decent job keeping calm between my sewing, listening to music, reading, looking at your photos, and having some phone calls. I'm not always the most patient as a patient, but I'm working on it. I've also unplugged from work and am just focusing my energy on healing.  Here's hoping I can keep that up.  

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