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

Monday, March 30, 2020

Getting stronger

I'm still healing and weak ( but getting stronger every day). They found me a heart on Monday 2/23 that is strong and working like a champ. On a step down unit and lots to happen in the next few days, but hoping to be home by the weekend! Thank you for your prayers and for staying home. The care here is incredible and we've been really lucky so far. Waiting to get videos of the new heart beating while it was being brought over!

Hi from jodie

Wow, step  6! I'm finally awake long enough to say hello. I love you all so much. The nurses and doctors are incredible and I'm moved down to a step down cardiac unit, another closer step to home.

We are both so happy Jodie is doing much better and is making such huge strides towards recovery. Every piece of good news feels like she is taking another step to coming home.

Thank you,
Jodie and Peter

Saturday, March 28, 2020

Keep pushing forward

I talked to Jodie a few times today. She finally is feeling well enough to ask me to continue reading Harry Potter to her. Her voice is getting stronger, she is breathing easier, and they are weaning her off more medications. The nurses told me that she walked about 300ft this morning!

Also, I finally got to see her in person! This afternoon, Jodie's nurses wheeled her out to the windows, and I drove over with the dog to wave at her from below. Stella was a little confused why we were walking around not on grass, but I made it up to her later. It was great to be there for Jodie... further away than I would have liked, but we're making it work as best we can.
It's not easy to make out, but she's waving from her seat a little behind the window.


Thank you all for your continued support.

Thursday, March 26, 2020

Things are looking up

This morning I got a video call from Jodie! She was tired, and it seemed difficult for her to talk any louder than a whisper. Today, she has already been up and walking at least four times up and down the hallway. Jodie excels at pushing through and she is making big progress!

She looks so much healthier than when she went in for the surgery. It's amazing what a difference a healthy heart makes. This is going to change her life and I'm so excited to for a long happy future together!

Thank you and God bless.

Wednesday, March 25, 2020

Getting stronger, progress towards recovery

Good afternoon, I received a call today from Jodie's surgeon that she is out of the OR and headed back up to the ICU. They finished up what they needed to do, and she is currently without assist devices. That means no more ECMO, no balloon pump, just her new heart beating on its own.

So relieved that she is doing better. She is still sedated and on the ventilator, but they should be removing that within the next 48 hours or so. Once she is breathing well on her own they will start to wake her up. At this point, the visitor restrictions are only tightening further so I will most likely be unable to visit until she is ready to be discharged. However, I have been assured that I will be able to work with the nurse to set up a video call as she wakes from anesthesia. It won't be ideal, but I understand the precautions are being put in place for good reason. I don't want to do anything that might jeopardize her health while she is recovering from the surgery.

I can't wait to see and talk to Jodie. I really can't wait to hold her in my arms. She is pushing through this and I love her so much. God willing we will be together soon, dreaming of the future, safely at home, hale and hearty.

Thank you

Tuesday, March 24, 2020

Short heartfelt update

Today was a good day for Jodie; she is definitely improving. The nurses say that she has healthy color, not pale, and is comfortable and peaceful. They removed the balloon pump this morning and the heart is beating strong. Additionally, they have weaned her off the ECMO almost entirely, and they are planning to remove it tomorrow. In an ideal situation, she would most likely need to stay at the hospital for around 14 days post-surgery; but depending on the Covid situation, that time may be either shortened or lengthened.

I am kind of going crazy at home not being able to see her, but I'm trying to keep myself busy and productive to get the house and yard as clean and complete as I can. I want her to be able to come home and relax in comfort without worrying about projects that we haven't done yet (she will probably come up with plenty of her own projects soon though!). However, with every call and update I get from her transplant team, I am able to slowly relax and I'm able to get some sleep and make myself eat regularly.

Thank you all for the support you have given Jodie and me, especially considering the tumultuous situation this pandemic has been causing. As we all are struggling to adapt to these necessary changes, thank you for reaching out to help us through this transplant process.

God bless you all, thank you, stay at home.

Monday, March 23, 2020

Transplant Update

First the good news: Jodie's heart transplant is complete, after a six-hour operation that started around 6 a.m. She was stable throughout the entire operation. The heart came from a 29-year-old donor outside of NC. We believe this will be a strong heart for her moving forward.

Right now, Jodie is in the ICU and her doctors are still working to get the new heart up to full functionality. This is not unusual after a transplant, but most likely Jodie will remain sedated for at least the next day or two.

Her new heart started beating on its own as expected, but it is weaker than they want it to be, so right now they are using some temporary measures to support it: a balloon pump, which is common after heart surgery, as well as an ECMO system. The ECMO provides time for the body to rest and recover after transplant by doing the work of the heart and lungs (oxygenating blood and pumping it back into her body). Maximum time on ECMO is expected to be 24-48 hours, and they will be checking on her every few hours to reevaluate.

Jodie's doctors are confident this will work. Significant improvement is expected soon. I'll get a call after they remove the ECMO and can update everyone further then on her progress and recovery.

One month post transplant!

Wow.  It is almost unbelievable that it has been one month since the transplant.  So much has happened, with two weeks in the hospital, and ...