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, January 11, 2021

Vaccines

I got word from my transplant team last week that they are approving anyone who is on maintenance doses of immunosuppression (which I am) to get the covid vaccine when their turn in line comes. Because I am a mental health provider at Duke, they consider that front line, and I am in the 1a category. I was able to go onto the portal and schedule my first covid vaccine for tomorrow morning! 

I am so excited that I get to take it this soon, but am also not necessarily expecting that I will get the full 95% efficacy given how my immune system works. I'm going to give a brief, simplified version of an immune response below to explain why. 

It's good to know that there is an innate immune system, which is kind of like the front line of an army and heavily hits pathogens, and then there is an adaptive immune system that recognizes things as self versus non-self, and once it's identified something as non-self, can then later attack it with precision, like a targeted hit. Normally, when you get a vaccine or are infected with something new, a macrophage, one of the types of innate immune cells, 'eats' it, breaks it down, and then displays the new weird proteins to a T-cell. In the covid vaccine I'll get, mRNA for the covid spike protein will be injected, my cell will take it in, and then it will read the mRNA to make the protein (since that is what happens normally when mRNA is in a cell). It doesn't get into the nucleus so can't change your DNA, and the mRNA will only last a few hours. The spike protein is part of the virus, but not the whole thing, so you can't get infected from the vaccine. The tcell the does two things. It activates the B-cells to recognize the proten as non-self. Antibodies are made to find this protein in the rest of your body, which then attach to the protein/infection so that macrophages know to come eat it. These antibodies also go into your memory cells, so that next time you're infected you recognize it right away and can make antibodies more quickly. The other thing that happens is that the Killer T cells inject things into the infected cells that make it burst, killing the cell and stopping the infection/protein. Macrophages then clean it up. When these cells burst, it can cause inflammation, fever, achiness, etc. So when people say they get sick after a vaccine, its actually your immune system doing what it is supposed to, and the stronger your side effects, the more you know it did its job.  
So when I got the transplant, this same process would make my body recognize my new heart as non-self. Because of that, I've been on immunosuppressants, and will be for the rest of my life. The two medications I'm on stop my body from having a robust response to my new heart. 

Unfortunately, it also means that the medications will also have this effect for vaccines. That doesn't mean it won't work, but I probably won't get as strong of a response. So even once I'm vaccinated, I won't know how well it worked and will need to keep being very careful. 

With everything happening in our country last week, I have been really holding onto hope. I hope that we can start hearing more of the truth from our politicians and that they are able to calm the masses. I hope that with the new adminstration, we get covid under control. I hope that the domestic terrorists who broke into the Capitol and caused terror and destruction are held accountable, and that our country really takes a deep look inward to understand how this has built up over the last 4 years, and finally do things to address it. I hope that we get back to a place where we value science and actual experts, and where we are humble enough to know that our opinion after a google search is not as valid as that of someone who has studied a subject for years. 

I'll keep you posted on how I'm doing post vaccine, both 1 and 2. I have a fair number of friends who have already gotten it, since they are in the medical field, and it will be interesting to see how similar or different my reaction is.

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