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, April 24, 2020

More Random Musings

There have been a few random thoughts and things that have happened that I've been meaning to share, but have not necessarily fit into a full days narrative.  So today will be another "random musings"

- Compression socks rock.  Even though my feet are back to normal size now, wearing them makes everything feel better.

- It is REALLY nice to have normal size hands and feet again - it makes doing everything easier.

- I have lost over 15lbs of water weight in a week and a half, and it makes a HUGE difference in being about to move around, and feeling better.

- It seems like maybe once a week I have what I call a "healing day" where I am tired all day and can't really do much other than lay around.  I think my healing is happening all the time, but every once in awhile there are "spurts".  The one this week happened two days after they removed my staples.

- My scars are looking pretty good.  The scar where the old pacemaker was is basically healed, and it is really, really thin.  Looks better than the old one did!  The long sternal scar ia healed mostly at the top and bottom, but is still working to fully heal in the middle.  I'm using steri-strips (wound closure strips) on some parts to keep it together.  While it is healed enough, there are a few parts that need some help to stay close together so the scar stays thin. The scabs from the chest tubes look good and I'm waiting on them to fall off so things will be more comfortable.

- I've been needing a nap every morning, but yesterday I almost didn't and today while I laid down and rested, I did not fall asleep.  I'm hoping that means I'm getting stronger.

- For the most part I don't even need tylenol anymore, which is exciting. I'm not having any big pain anymore, although as my scabs rub there is still some discomfort/slight pain, and every once and awhile I get a twinge from the stenal scar.

- My range of motion is so much better than I expected it to be.  I can lift my arms all the way up, get clothes on and off pretty much by myself, and except for reaching really high, can do almost everything else.

- I'm no longer needing to check my med list each med time - I know which ones should be at each time, and I can recognize each of the pills (there are a few that I'm not 100% sure on the name, but I know what type of medicaiton and what it is for).  Some of those will go away over time, I do know the ones that I will keep needing.

- My biopsy and check-ups were good on Tuesday, and they don't want to make any changes.  I now go to every other week appointments.

- I've stopped using the chariot for the most part.  The last few days we have done our walks on the HOA land trails (in our neighborhood, they have a bunch of grass and wooded trails throughout the neighborhood that is maintained), and it was not conducive to the chariot, so I walked while holding Peter's hand. Walking through the grass and the trees is much more satisfying that walking down a street.  We brought our masks with, figuring if we saw anyone that we could put them on.  Today we did not see anyone.  Walking off pavement and without the chariot definitely uses more muscles and makes me more tired, but it is really satisfying.

- The more things heal, the more it is easy to stand up straight and walk normally.

- I have cut out a ton of fabric for masks and am excited to start sewing.  I have all the colors of the rainbow! Most of them are the regular size, but I'm making a few that are 'large' and I had a request for a few kid ones, so I modified the template to be a little smaller too. I still need to cut out the flannel layer and some more backs, but I can at least get started on the ones being sent to friends and family this weekend, and then once I cut a little more I can sew next week for the ones for the nurses.

- Convalescing during Covid is weird and not at all what I was expecting.  I knew that after transplant I would be in isolation in the house, but I also expected that I could have visitors.  I think it is now catching up to me (a few weeks after everyone else who has had to stay at home) how isolating it will be.  It is also frustrating that there are things I want to help with, but a lot of the time if it came from outside, I can't due to infection risks.

- I'm really having to think about things with food that I didn't used to.  I have to be careful of contamination, so if I don't finish my plate, I shouldn't save it as leftover since I could have inadvertently added bacteria that could then grow.  It is meaning being more purposeful in how I'm serving myself, in what utensils I'm using, in not re-using cups and plates, in pouring things out of bags instead of putting hands in to grab them.  All of these are probably good things, but are also things that need to be thought about.

- I have moments where I feel really healthy and like I'm 'better', and then other moments where I feel really tired and it is clear I'm healing.  I'm happy for the healthy feeling moments, but it in some ways makes it harder to have the moments when I'm clearly healing.

- I'm so grateful for this miracle and pray everyday thanking God for the timing, this heart, everything.  I try to remind myself that things do not go by my timing or my plan, and to be patient and understanding.

- Thursday nights one of our friends in Nashville, Chris Ferrara, who is an awesome musician, is doing a Facebook LiveSteam every week.  The frst week was when I was in the hospital and I was having a really bad day, and it made me feel like myself and connected to others (outside of immediate famiy/friends) for the first time since I was in the hospital. Peter and I have started to plug it into our tv and watch it on Thursdays.  Its fun to request songs, and Chris has been super sweet and given me shout outs.  Yesterday I requested a slow song to dance to, and while Chris sang Peter and I shared our first dance post-transplant!  Our last dance before that was the night before transplant, in my hospital room, while navigating my IV pole and tubing.

- I'm really excited for a year from now when I know what my 'new normal' is with this heart.  I'm already imagining the hikes and bike rides and dancing that will be done.
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