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

Saturday, July 16, 2022

Roadtrips and Rejection

***This post will be fairly long. If you want to see what is currently going on with my heart but not all the background, feel free to scroll towards the bottom. 

We said a few months ago that we were going to just focus on our "live a long and happy life".  Since then, we have certainly done so. I got EvuSheld, the covid antibody shot, for some protection. We rented a trailer camper and drove out to Colorado starting Memorial Day weekend for our friends Stephanie and Cameron's wedding (where we also saw Tim), stopping in Nashville on the way to visit Tracey, Chris, and their baby girl Frankie. We had some awesome days in Colorado playing in the mountains, then headed towards St. Louis.  We had more than a day in St. Louis, which let us do some work in the morning, visit a museum and the St. Louis arch, and get to have dinner with Mom and Wayne (who we had not seen since 2019!). Then in Chicago we visited all the nieces and nephews, went to see the show Six with Liz (it was fabulous), and celebrated the life of my grandpa Neukirch before heading home.  A couple weeks later, we were still so excited about finally getting chances to see everyone that we haven't been able to over the past couple years that we decided to spend the long weekend of the 4th with more family. We drove up the Saturday before and stopped by Clear Lake in Indiana to see the Elliott family for a quick visit and a dip in the lake, then continued up to Devil's Lake in Michigan to spend the rest of the weekend with Scott, Anna, and their little girl Ellie (who LOVED our puppies). 

I was so nice to be able to be with people, even if it was mostly just outside. With all the traveling I was feeling a little more tired, but I chalked it up to not being able to go to the pool to swim and getting deconditioned. Over the long week I started having some weird symptoms, with my heart rate going up really quick and feeling out of breath.  On Tuesday the 5th we worked the morning in Michigan, then drove to Patty and Jay's place in Ohio with the plan to work from Columbus the rest of the week. That night I started feeling really bad, and we called the transplant team, who coordinated with colleagues in Columbus so I would be seen at The Ohio State University Hospital in transplant clinic on Wednesday morning. 

We got to the appointment, and they were concerned enough to have me admitted to the hospital. At first, they were worried I had a clot in my legs and/or lungs with all our road tripping. That got ruled out, and it turns out I was in rejection, which lead to the heart failure symptoms I was experiencing.  The OSU team started me on the standard treatment for this.  There are two types of rejection - cellular mediated and antibody mediated.  In cellular mediated, the body has an immune response to something, which leads to lots of things in your body that cause inflammation.  If those all go to your heart, it can irritate it and damage it.  Antibody mediated rejection is when your body is making antibodies - which are in your blood to find things that are non-self and tell your body to attack. My biopsy showed cellular rejection so I got 3 days of high IV steroids (the standard dose for this method), my breathing got better, and OSU decided I was stable enough that they could discharge me this past Wednesday contingent on us going right home and seeing my team so they could keep treating me. Peter, myself, and the dogs drove back home on Thursday, and then on Friday (yesterday) we got to clinic at 7:45am to be seen. 

It was a really long clinic day. My doctor was happy with how OSU handled the situation but did not like the way my heart still looked, so based on knowing how I have responded to treatments in the past, he recommended admitting me to the Duke inpatient cardiac unit.  My heart looks a little worse than it did a week and a half ago, which would support the idea that this may be a case of both types of rejection.  My team is taking a very aggressive approach. Friday night I got a vascular catheter, which is like a dialysis catheter, put into my neck that goes down to my heart.  This will let us do phlasmphersis, which will basically run my blood through a machine and filter out the antibodies. The idea is that if the antibodies are attacking my heart, then you get rid of the antibodies to stop the rejection. I will have 5 days of this starting tomorrow (Sunday) morning. Today, I got a PICC line (long IV catheter that goes from the arm into the heart and can handle really harsh medications that need to be delivered as directly as possible to the heart).  I had to get a pre-mediation of Benadryl, Tylenol, and the same high dose steroid from last week to "prep" my body for the heavy hitter, RAT-G, which targets the cells in the body that lead to all the toxic things in cellular immunity. The infusion was 6 hours long and made med sleepy and feel a little "off", but otherwise it was ok. 

So where are we now?  This is definitely serious and not something they want to see, but it does happen at times and most treatments will be able to reverse all the damage and get you back to where you were. It can sometimes take some time to get all the function back.  We are scared but also hopeful. Right now, I'm hoping for distractions so I can't dwell on the what ifs. Feel free to text me fun kiddo and animal pictures. I may not be up for responding to everything, but I still appreciate knowing that people are supporting us. We've had a few people ask, and I'm not allowed to get flowers as the treatments will be wiping out my immune system and I will be very highly susceptible to infections. At least I am allowed visitors, though we will have to be very careful with masking everyone (including me) with visits, as these treatments will completely wipe out my immune system in the process of stopping the rejection. 

In Summary: We traveled a lot and got to see a lot of our amazing and supportive extended family and friends. Unfortunately, I have been in the hospital for the past week and a half unexpectedly due to heart rejection. I expect to be in the hospital for at least a week for my heart to receive treatments, and it could be weeks/months after before I'm back to my "new normal".  Prayers and positive vibes welcome. We will be texting immediate family every day, but otherwise will put updates here. Feel free to reach out to my family or Peter's family for clarifications or questions. 

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1 comment:

  1. MarianneJuly 17, 2022 at 8:37 PM

    Dear Jodie, Not technically savvy I can't send "kiddo or animal pictures" but please know that the three of us, Hoyt and I are routing for you, and our dog, Apple, says "arf arf." You are the expert at being patient as a patient. May modern medicine
    fix you up while Peter, friends, and family support you with their love. We send you our love from NH, marianne and hoyt

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