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

Sunday, June 7, 2020

Some changes

Early this past week, I called to check in with my nurse coordinator as I had been noticing some side effects, including weight gain and diarrhea.  The doctors decided to bring me in for a cath, biopsy, and labs to be safe.  We had a long day in clinic on Wednesday as the hospital is back to doing elective procedures, which meant there was a long wait in the cath lab.

It looks like things are doing well in terms of rejection - still no sign.  My labs showed that my levels of one anti-rejection medication was high, and my kidneys are still not super happy.  The medication level that was high is one that can negatively affect the kidney, so they are decreasing that medication.  It turns out even though I gained back some water weight, I'm actually almost a litte "dry" (meaning I dont have enough fluid in my system), so they are stopping my diuretic too. One of the other anti-rejection medications can cause diarrhea, so they are decreasing that as well.  The overall plan is to eventually decrease these meds as low as possible while having them still be effective, so this is hopefully a step in the right direction.

Friday I had my intake assessment at cardiac rehab.  I had a 1 hour phone call with the nurse Thursday, and then today it was only 30 min in person.  In seeing the facility, there were more people working out than I expected, and while they were distanced, it was not as much as I would have liked to see.  I have my first appointment to work out on Monday morning, but I'm guessing I am not going to be comfortable going there once a week given how close people were (machines were probably 6 feet apart, but they had 5 bikes and instead of alternating people on them, so on 1, 3, and 5, they had them on three next to each other).  We will see how that goes.

The good news about them opening things up is that I can now get labs at the clinic closer to home in between appointments if needed, and my next appointment is not for a month.

So now I get to work on getting my stamina up so I can get more back to "normal". This weekend so far I've worked on some sewing projects, Peter and I went and got ice cream cones and walked around with them, and today we are tried a socially distanced board game with friends outside (using a fan blowing away from me, masks, and purell to stay safe) - I am definitely not advocating going inside peoples houses yet, but outside, with masks on, and only one household touches the board I believe should decrease risk of potential infection. Please keep being safe. 

I would also be remiss to not mention everything going on in terms of protests. My heart is heavy and I wish that there were quick fixes. I know a lot of white friends who are against racism but don't typically speak up. I would say now is the time. It's not enough for us as white people to be not racist - we need to actively be anti racist. This means looking to see our own privelege and how we unknowingly support systemic racism. To be silent right now may be easier, but it is also seen an implicit agreement that things are ok. I'm not anti-police, but police brutality and the disproportionate percentage of people of color arrested and who deal with other that violence is not ok (that anyone has to is not ok as well). It took until my social work grad school classes to really learn a lot of this history. If anyone is wondering where I got this information, or would like to read some books/watch movies about these issues, let me know as I have a list of titles I'm wanting to read and would be happy to do it with you.
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