Jodie's Journey: October 2020

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, October 30, 2020

So proud

As you know I've been volunteering with the Biden campaign. I can finally share my exciting news. A week ago there was a call on the volunteer message system that they were looking for people to share their story about the ACA and why it was important. I immediately reached out with the short version of my heart story, and they asked to send it to the producer. A few days later the producer sent me a guide of interview questions, instructions to video myself answering them, and a Box account to upload to. I taped the videos that night. The next day they asked if I would be ok sending in some photos from throughout my life, and I happily did. I was initially told they were going to do a 3 min compilation of stories.

In the end, they decided to feature just my story, and I am SO PROUD to be in this ad talking about how the Affordable Care Act changed, and saved, lives. Had my dad and grandpa not paid for my COBRA back then, or if my department had not allowed me to do a third rotation my surgery term, I would have lost coverage and would have had to drop out of grad school, move home, and my life could be very different.

Heres the link for FB: https://fb.watch/1suqfawgxK/

And for Instagram: https://www.instagram.com/tv/CG-v6i6BYB5/?utm_source=ig_web_copy_link

We only have a few days left until the election. Vote. Talk to your friend and get them to vote. Volunteer to phone bank (I'm both phone and text banking this weekend).

And please, wear your mask. Covid rates are really high right now, and its the easiest thing to do to reduce the spread.

Sunday, October 25, 2020

More than 7 months!

Friday the 23rd was the 7 month mark since transplant. 7 months! In some ways it seems like so much longer ago, and in others not that long.

I spent Friday having a full day of work. Saturday I phone and text banked for the democratic party. The election is so close, I'm doing everything I can. I even offered my story of why the Affordable Care Act is important to me to the be used by the Biden/Harris campaign. I don't have all the details yet, but it looks like it will be used in some way. I'm really excited at the idea that my words may help others understand why healthcare is so important to people in this country, and what is at risk if things go backwards. I have to know I am doing everything I can to try to protect health care. If the ACA is overturned and the pre-existing conditions clause goes away, or life time maxiumums come back, so much would change for me terms of healthcare and general life things. I'm really encouraged, but know that a lot can still happen in 9 days.

Yesterday night Peter's sister Catherine had her bachlorette party, which I was able to zoom into. It was nice to be there virtually.

Today I was a bit tired so decided to have a lazy day reading. Full week of work coming up. We got some duck from the local farmers marker and are excited to have some today or tomorrow (we'll see how long it takes to thaw).

Hope you had a good weekend. If anyone is on the fence about who to vote for, I'd be happy to share more with you about why I support Biden/Harris. Also, if you want to vote but aren't sure how/where, let me know and I will help walk you through it!

Tuesday, October 20, 2020

Wishin' . . . and hopin' . . and prayin' . . and plannin'

The last few weeks have been interesting. As I've been feeling better, I've had different thoughts come to mind. Thinking about the future, what could come next. Peter and I started talking about children again, and thinking about whether we want to adopt or if there are other options. Peter told me he heard about some transplant patients getting pregnant. I figured this was a really bad idea, but looked into it. It looks like there are definitely risks, but that a transplanted heart can take the strain of extra fluid and weight from pregnancy. I still think it is too much of a risk, as it can increase rejection. But, we had looked into the idea of extracting my eggs in the past, with the idea of maybe doing surrogacy, and that was not safe when I was in heart failure. But now, I wonder if it that could be an option. I emailed the team, but have not gotten an answer yet.

I also started to think about work and school. My initial plan, many years ago, before heart failure, was to get my PhD. Could that be a possibility now? Would I want to? I think that what it has shown me that it is ok for me to hope again. I realized that before transplant, even though we would think about the future, it could only go so far - to transplant, to after transplant, but not much further. I don't think I really realized it before, than I didn't really think about the "after" transplant part. And while there is still a lot more that has to happen to get to the future, I'm also excited about being able to think about it, pray about it, hope for it. Who knows what will happen, but at least now I can look forward without the constant fear of "what if" over my head.

Today I even had my very first solo "outing". I just went to Walgreens to pick up a prescription and some melatonin, but it was nice to be able to do something by myself.

Monday, October 12, 2020

Texting and Hope

Today I am feeling hopeful. This past Monday night I did text training with the Biden campaign. On wednesday night I started sending texts to remind people on the west coast about the debate. It was overall a really positive experience - yes there were some wrong numbers, opt outs, and Trump supports, but more than that it was people saying they are supporting Biden/Harris. Today, I sent more texts, some about if people are registered to vote, and some about if they want to volunteer. There were so many people who said yes, or that they already are volunteering! Again, it made me hopeful.

I had my first bookclub meeting ever (which is crazy, given my love of reading) that my cousin Liz hosted. It was really fun, and next week we get to meet the author and do and q&a with her. I'm excited to have had an almost 2 hour long book discussion!

Its been a long and short week at the same time. There is a lot going on for work, so that tends to feel long in some ways, but the days go by quickly. Today, I worked in the morning running a training, and then Peter and I grabbed lunch and found a new park that has some great trails in it. We are looking foward to checking it out more some time soon.

We are starting to make plans for our Columbus and Chicago wedding trips in November and December. We are excited, but also trying to be realistic that we still need to be careful and that we won't be able to see everyone.

Here is hoping you had a good weekend. Are you registered to vote and do you have your voting plan in place yet? If you aren't sure, you can check at https://2020victory.io/iwillvote

WHAT IS THE HEART TRANSPLANT PROCESS?
1) Have a severe enough condition to be referred for evaluation for heart transplant.

2) Get evaluated, which includes a bunch of appointments and tests to determine that the rest of the body is healthy and functioning as expected.

3) Wait for transplant team to review results of the evaluations to see what priority level you qualify for and then lists you for transplant.

4) Wait until a suitable heart becomes available, that nobody above you on the list can use.

5) Get the call, and go to the hospital when they say. Hope it is not a dry-run and the transplant happens.

6) Start recovery process in the hospital. Typically 10-14 days before allowed to go home.

7) Continue recuperating at home. Expect lots more doctors appointments and medications moving forward to keep an eye on health.

8) Enjoy a long happy life.

*We will italicize each step as we work through it