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

Thursday, February 20, 2020

Radioactive

Today is the second day in step 2, which means lots of tests.  Peter drove me in and then went to find a place to set up his laptop to work while I went to radiology.  First up was a lung ventilation and perfusion test.

The goal is to see how your lungs are working, and it consists on three parts.  First, I got a chest x-ray. Then I went into a nuclear medicine testing room. There was a machine that had a long table that moved my legs into a circle, so that my chest was between the part that takes pictures. I laid on the table with my feet towards the whole, and they moved me in so I was between to the plates.
For the second part in there was a mask that was put over my face and I breathed in radioactive air for a few minutes while they took pictures, then continued to breathe room air for some more minutes to see how my lung ventilation (how air moves in and out of the lungs) is working. After that I was injected with a radioactive solution into my vein, and then they took a bunch more pictures. This was to look at my lung perfusion, or how well the blood flows through my lungs. For this third part, the machine was re-positioned and turned around me a few times to get different angles. And apparently, I'm slightly radioactive for the rest of the day.

Since I'm always bionic due to my heart valve and pacemaker/defibrillator, that means today I'm bionic AND radioactive!

The second test was an abdominal ultrasound. I've had hundreds of ultrasounds of my heart, but I'm not sure if I've had one of my abdomen. The ultrasound tech came in and as we got to talking, it turns out she has a 7 year old daughter with congenital heart defects. She thought I looked familiar, and we realized I gave a talk for the heart patient parent group a year ago she was at. Small world! The scan looked at my kidneys, liver, pancreas, gallbladder, and bile duct to make sure it all looks healthy. 30 minutes and we were done!

At that point I was a bit hangry, since I wasn't allowed to eat anything this morning in preparation for the abdominal ultrasound. I got a chocolate chip bagel and cream cheese, scarfed it down, and then went to find Peter. He was in the resource room in the Duke Medicine Pavilion, which has some nice desk space with computer hookups, couches, etc. He was at a stopping point, so we walked over to the children's hospital to see a few of my friends/colleagues who have offered to be there to support us when we get the call if it's during the day (since they are here most days). I figured it would be good for Peter to meet them now. After a quick hello, we headed to the cancer center cafe where Peter got a sandwich and I got a smoothie. I think this may be the best food option on the hospital campus, they even had nutritional facts for every item on their menu. I had an hour and a half until I needed to check in for the next test, so we headed back to the resource room. Peter got back to work and I started on Hilary and Chelsea Clinton's "The Book of Gutsy Women", which Aunt Elaine and Uncle Brad got me for Christmas. I'm liking it so far, and since it's short vignettes; it's easy to start and stop.

Then it was time for a pulmonary function test, or PFT. This test measures lung volume, capacity, how air is flowing, and how well my lungs remove CO2 from the blood by putting in oxygen (gas exchange). For this test, there is an apparatus I put in my mouth that is connected via tubes to the machine and computer.  When we are ready, clamps go on my nose so all the air I breathe goes into the apparatus. They have me breathe at different rates - for example, take 4 normal breaths, then take a deep breath and push all the air out fully (can take up to 10 seconds), or take a deep breath and then huff and puff by pushing air out quickly for 10+ seconds, while they get data throughout. These things are more tiring then I expected.


Our last meeting of the day was to find out how much this will cost. Thank God for insurance. Without it, this process (evaluation, transplant hospitalization, a year of care after) is over a million dollars not counting medications. I chose the PPO health insurance plan, which let's me get care anywhere and has an out of pocket maximum. So thankfully, I'll only pay that amount (which is much smaller and I've already put aside), plus the medication costs. I'm glad I know about insurance and made the choices I did during open enrollment, or this meeting might have gone a lot worse. Some plans have you pay 10% of all costs, which would be astronomical.

Now we are home and trying to relax. The weather forecast it's calling for a few inches of snow. This may sound like nothing to everyone up north, but down here that means things may shut down for multiple days. We are hoping it is not too bad and that they don't cancel my appointments for tomorrow. 

So, assuming that nothing gets cancelled due to weather, next up are 2 heart tests, labs, and appointments with the nutritionist and transplant psychologist tomorrow.



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