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

Friday, February 21, 2020

It's snow problem

I've been keeping an eye on my Duke email, since I get the insider scoop on closings. As as 10pm last night, the severe weather policy was in effect until 10am, meaning clinics won't be open until then. I assumed that my 9am nutrition appt  would need to be scheduled, but everything else was after 10. Sure enough, I got an automated call before 7am saying my appt was cancelled and I would be called to reschedule.

Peter and I both got some work done from home this morning, and then headed to the hospital. We gave plenty of time to get there just in case the roads were bad.  We ended up getting there at 9:07, and when I got over to the clinic it had a metal gate down with a sign saying they were opening at 10.  Peter went back to the resource room to set up, and I sat and read until they opened up.

I got called back for an EKG, which is when they put ten stickers on your chest/extremities that wires can connect to, and then they record the electical beats of your heart.  This usually only takes about 5 minutes.  Next up was an echocardiogram, which is an ultrasound of the heart.  The ultrasound tech was nice, and as we got to talking about work, it turns out her roommate may be a good fit as a coach in our cardiology peer coaching study at work.  That was unexpected but cool. It's always nice when the tech is talkative; it makes it seem like the the time passes quicker. We got through a lot of the echo, but there was one area that was not easy to see. When they can't get a good image, you need to get an IV so they can inject a chemical into the blood that gives a clearer picture.  The ultrasound tech called the nurse to put in an IV.  I knew I would need one later for the CT scan, so it wasn't too big of a deal.  I tend to be a hard stick, as I have small, valvey veins.  The first person got the IV partway in but it would not go all the way into my arm.  A more experienced nurse came in and tried to salvage it, but ended up having to start over somewhere else.  She was successful, so we were able to finish the echo.  Overall, I was in that clinic for about and hour and a half.

I headed over to the next clinic to check-in for my 12pm appointment with the transplant psychologist and decided to get my labs done early since I had 30 minutes to kill.  When I went back, the phlebotomist told me that I had one lab for today, and 26 for monday.  She decided to ask a transplant nurse if they could draw some of those labs today.  The transplant nurse saw I had the IV, and suggested the maybe they could draw some from that instead of sticking me again.  It was getting close to noon, so she said she would check on it while I headed up to see the psychologist.

The psychologist was nice, but it was somewhat surreal to be in the appointment.  Technically we work for the same department, and I have a similar role to him but with some of the pediatric patients.  The appointment went well, but there were definitely a few moments were we both stopped and had a laugh as we recognized that it was more the "therapist" me talking.  I got a phone call during the appointment from the nutritionist, and we recheduled for 1:15.  I quickly texted Peter to ask him to grab us lunch.  We finished the appointment and I think that we covered everything.  I wasn't worried about it, but still good to hear that the psychologist had no concerns about me being able to cope through the process.

Then I went over the cancer center cafe and met Peter for a quick lunch.  The cafe is called the "tropical smoothie cafe", and I was surprised that the chicken salad had pineapples in it.  The sandwich was delicious, and after we both finished it was back to the main clinic to meet the nutritionist.

This was the one appointment today that Peter was supposed to be at with me, and that he wanted to be regardless.  We went over my low sodium diet, and reviewed a lot of restrictions that I will have after transplant due to being immunocompromised.  We will have to have a whole blog post to go over this, there was so much information.  Nothing was unexpected to either of us, but it was still good to have someone review it all and be able to ask questions.  Now that we know, we can start doing some meal prep to put things in the freezer.  While I was in this appointment, the transplant coordinator called to let me know they were able to reschedule my CT scan to 3:30pm, instead of having to come back at 8:30pm. 

Peter headed back to the resource room to do more work, and the nutritionist helped to find the transplant nurse, and we were able to verify that they could draw the labs out of the IV.  They found the most experienced clinic nurse, and the phlebotomist came too.  There were 26 tubes, multiple syringes, and some other things that could be needed.  The clinic nurse was able to draw out blood into small syringes, then would hand it over to the transplant nurse who would give her a new syringe and hand over the full one to the phlebotomist.  Apparently there is a specific order certain tubes have to be filled, so the phlebotomist was then able to use the syringe to start filling tubes. They got the one filled that had to be done today, and then just started filling others.  After 6 syringes of blood, we decided we should stop, as I needed the IV to work for my next thing.  With that, they were able to fill 11-12 of the tubes.  It wasn't all of them, but a lot that I won't need to do on Monday. I am so, so thankful to the nurses and phlebotomist for going out of their way so I would not need another stick - they did not have to do that, and their kindness was something I didn't realize that I could use at the time.  I've felt confident about the team during this process, but this really helped me to see how much they care about their patients and are willing to take the extra steps.  I'm lucky to be receiving care here.

Next, I headed over to the cafe to hydrate, then went to check in for the CT scan about an hour early.  They were able to bring me back pretty soon, and since I already had an IV it was quick.  I got on the table, they moved me into the machine, and then we did two scans.  The machine has two face images that when you look up you can see.  The light up the one to breathe when they want you to do that, and the one to hold your breathe when it is time.  They got images twice, then the CT nurse came and injected the contrast dye through my IV.  That helps give a clearer picture.  It also feels really warm, as as it travels through your body it pools in your pelvis area - or at least it feels like it.  So after the contrast, you basically feel like you are peeing on yourself but you aren't.  It's a weird feeling, to say the least.  This was done quickly, and then the CT nurse took out my IV and I was good to go.

I went to find Peter, and I was so tired that when he got a wheelchair to take me to the parking garage I didn't protest... would have been a bit of a walk.  We got home and I relaxed on the couch catching up on a couple episodes of Marvelous Mrs Maisel on Netflix.  Now on to dinner.

Tomorrow morning I have to go to the dentist for the filling at 8am, then I go into work since we are running part 2 of the coaching training.  We will see how I'm feeling at the end of the day.  Tonight I'm looking forward to going to bed early. 

1 comment:

One month post transplant!

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