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 19, 2020

First Appointment

Jodie: Normally the transplant evaluations take place across 4 days, starting on a Monday and meeting with the social worker/transplant coordinator the first day.  Because I work in the medical field, already have a fair amount of knowledge about the process, and usually have patients on Tuesday/Wednesdays, they decided to let us start at the end of the week.  We had the first visit today, and it was with the tranplant surgeon. 

It's the same clinic waiting room I'm used to going to, but on the other side.  We started off by meeting with the transplant surgeon's physician assistant.  She was really helpful and gave us a lot of detail before we saw the surgeon.

Peter: From the perspective of support and caregiving, most of my questions were regarding logistics and prodecures. The rough order of operations will be: locate donor heart > match patient with heart > call patient in > prep patient for transplant > evaluate heart for suitability > begin surgery. However, there is a possibility that at any point in these steps they determine that the heart is not suitable, they will not follow through with the surgery. They would call this situation a "dry run," and we have been told to expect this as a possibility, but not necesarily likely.

When Jodie goes in to be prepped to surgery, I will be provided a pager that will give me regular updates throughtout the entire procedure. They estimate that from the point in which Jodie goes in until the point they contact me to come back to her side, it may be upwards of 10 hours.

Jodie:  On my end, having additional details was really  helpful.  When I get the call, they will give me an idea if we need to come in right away, or if we can take a little time (like go home, let out pets, come back in one car), and that will be based off of how far away the donor is - although they won't tell us specifics.  Once there is a donor, that information goes into the national United Network for Organ Sharing (UNOS) system and they start looking for a match.  If no one else who is a higher priority rating can use the heart, then I would get the call.  One of the Duke surgeons would go to where the donor is and evaluate the heart to see if it is suitable.  While that happens, I'll get to the hospital and start being prepped.  Until the surgeons think things are good to go with the donor heart, even if I'm back in the operating room, they won't really start. Once they have the go ahead, the surgeon still at the hospital will begin to get things ready, with the goal that as soon as the donor heart arrives they can implant it.  The actual surgery time is probably between 6-8 hours, but it will be longer that I'm in the OR and before Peter can see me.  After the surgery, I will be in the ICU for at least 1-2 days, and as I wake up and am doing well they can slowly take me off of machines.  Then I would go down to the cardiac floor for the rest of the hospital stay, which could be from 1-2 weeks long before I go home.  Overall, I think we both learned a fair amount and feel confident in everyone on the team so far.  We had a few "worst case scenario" fears and they had good answers for all of them. 

Peter: Today was day one of step two in the process, and it was mentally exhausting. Thankfully this evening we also had a small group bible study with folks from the church we go to together. Being able to talk through some of what we learned helped us a ton with processing everything from the appointment, and I feel we are very blessed to have this supportive community.

Tomorrow will be a long day. I am going to be driving Jodie to the hospital in the morning, working remotely from there for most of the day. While we are there, Jodie is scheduled for 3 tests and an appointment with the financial care counselors. 

Thanks for walking with us through this journey, and please keep us in your prayers these next few days.  We are personally praying for patience and to stay hopeful/optmistic.
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