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

Tuesday, March 3, 2020

Keeping busy


As mentioned in an earlier post, one of the things that we have on our "must do" list before transplant is to renovate our bathroom.

Jodie: The current shower is dated, hard to clean, and we suspect there may be mold behind the tiles.  This is not ideal for a lot of reasons, but would be a bigger problem once I'm immunosuppressed.  We have been talking about re-doing the bathroom since the fall.  The plan is to remove the current tiles and tub, replace the walls behind (including any of the wood framing that does not look good), and then put in a tile shower with a bench.  We are also going to be switching the shower to a combo shower head and handheld wand set-up.  The idea is to not only make the bathroom cleaner, but it will be more functional for me, especially after surgery.  Having a place to sit and a handheld shower wand will help with being able to keep myself clean.  The shower will be easier to walk into than a tub.  And including some grab bars will keep it safe.  Peter has really taken the lead, and I'm excited that he found someone who can start right away.

Peter: The tiles we bought at the Habitat ReStore months ago have been sitting in our kitchen for long enough that we started using the stack as a shelf. Its past time we got started with the project, so its great that we finally seem to have a path forward that doesn't require me to be the one to lay the tile. I can do it, and I have done it before, but it sucked [Jodie here - I really enjoyed it! We quilted a wall!] I think the end product looked good, but its definitely one of those things where I would happily pay for someone else to do it if its financially reasonable. I sketched out roughly what we want to accomplish for the contractor, hopefully it turns out better than I drew it.

 Jodie: I'm really, really relieved that the contractor can start next week Monday.  We ordered the shower fixture yesterday, went to Lowe's and got tile for the shower floor that matches the wall tile Peter previously found at the Habitat ReStore.  We also started looking at other fixtures and bathroom accessories for later.  Right now we are focusing on the shower and floor, but the overall plan will be to eventually replace the vanity, light fixtures, other bathroom fixtures, and paint.  Normally we would just DIY everything, but it's good to know that the hardest parts, which would take us a long time to do, should be done in two weeks. Even if I were to get the call that they have a heart for me really soon, there should be time for this to get finished either before I get home or soon after.





Peter: Definitely looking forward to this being done and then we can worry about other house projects! After this is done, we need to get shower doors (considering ordering through Lowe's since they can include installation), and build out a pantry off the kitchen. If we like the work for the bathroom, we may use the same person for this. It will be a smaller project, but I'm really looking forward to that one being done. The idea will be to split the "formal dining room" (that we don't need because we have two dining rooms) into a large pantry to enter through the kitchen, a small office to enter through the entry hall, and a coat closet within the new office. Technically, once we add a door, this will be considered an additional bedroom since it will have windows, door, and closet.

I am coming to realize the importance of keeping ourselves busy to not settle into stressful thoughts about the uncertainties of the future. This is part of why I am taking the lead with the bathroom work at this time, it feels good to be able to focus on something with visible results and a clear end in sight. After these couple of house projects, I'm not sure what I'm going to need to use to productively occupy my down time... maybe I'll pick up a programming language, maybe I'll pick up boat building, maybe I'll pick something I haven't thought of yet. Regardless of what I choose, I know I will need something... if anyone has ideas, let me know.
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