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, December 27, 2020

9 months, Merry Christmas, hiking, and puppies!

The 23rd was 9 months post transplant, and Christmas day is 9 months since I woke up in the ICU. Wow. It seems like so long ago, but also not that long ago. 

We had a very low key Christmas, with a few video calls to see the nieces and nephews open presents. It was hard to not be there, but the right choice for us this year. We braised a duck in the pressure cooker with lemon, rosemary, and potatoes. I also bought pasteurized eggs so I could have a runny egg and bacon for breakfast. Peter and I got some fun board games we really like.

Yesterday we went for a 2 mile walk around a pond on a greenway. Today we did a two mile hike at Occeneechee mountain with Peter's cousin, her husband, and their two girls. It was a beautiful day. We encountered some awesome views and hiked for about 2 hours. One part was steps going up about 200 feet that were rough, but I did it. It's amazing to realize how much more is possible now.

On the hike we saw a bunch of dogs. We had not brought Stella because 1) one of the girls is scared of dogs and 2) Stella was limping by the end of the walk yesterday and didn't really want to take one this morning, so we decided she needed the rest. 

Also, we are getting excited thinking about the new puppy we are going to get. The litter was born on Christmas Eve/early Christmas morning, and they had 8 puppies. We have reserved one of the boys, and are naming him Bosun. He is an Australian Shepherd, from a breeder up in Maine, and we get to go up the week after Valentine's to take him home! We are planning on bringing Stella and taking a few days in Deer Isle as vacation. We are so excited.

Monday, December 21, 2020

she's ok

We didn't get a call overnight, but peter got the word that Stella was ok around 730. He brought her home with some meds, and we cuddled for awhile. Had a site morning but productive afternoon. 
stella was tired and a bit clingy today, which was good since we had to keep an eye on her.

We joined a small zoom solstice celebration tonight and it was nice to catch up with friends.

Sunday, December 20, 2020

Crazy day

Today has truly been a crazy day with so much in it. Warning folks - this will be a long one. We did not find a tree at the tree farm last week, but we did find a lot with local trees and got the tree up and decorated.   Last week my friend Stephanie sent me a picture of a tree skirt quilting pattern after I mentioned that I didn't have a nice tree skirt. I really liked the pattern so bought it, and started cutting out fabric. In my mind, it made sense to make the tree skirt so that I could then warp presents and put them directly under the treee. I've been working on it a bit at a time, and was able to get both the underside and the main top pattern sewn yesterday. I got an ornament to commemorate this year - it says "my heart beats on because of my donor, 3-23-20"
Then Peter and I cleaned a bit, in part because it needed in, and in part becaues we were going to have company. For the first time inside! Shaun and Melanie got married a week ago yesterday, and then came down to Georgia and South Carolina to have a short honeymoon trip, Since we are in North Carolina, we asked if they would be driving close by us on the way home, and they said they could stop. I'm realizing now that this was actually a bit out of the way, but am so happy they decided to do it. This was really exciting, as it was awesome to see their wedding life streamed but so hard not be there. They did give me a few photos from the wedding that are awesome.
The plan was to get up early today, work on the tree skirt, and hopefully be done by the time they got here. I was able to quilt it all, and just needed to do the finishing touches. Shaun and Melanie got by us a little after noon, we put some kn95's on the doorknob for them, and then they came in. Into our house. While we were in it. I got to get a hug from each of them, and I almost cried. I really appreciated getting to go visit Peter's family, but there was something about getting to hug my brother that felt like the best Christmas present ever. We chatted for a little over an hour, Peter got to show Shaun his remote controlled lawn mower, and they told us about some of the fun sights they had seen. Too soon, but also understandable since they still had about 12 hours to drive, they headed home.
I continued to work on the tree skirt. I finally finished it, and we put it under the tree and unloaded two boxes of wrapped presents under the tree. 
We read for a bit in that room, then I went to make dinner. After dinner, Peter and I were hanging out in the family room when I got a phone call. The reception wasn't great so I went in the other room. I'm so thankful I got that call, as when I went in I saw that Stella had shredded one of the presents and eaten something. Turns out it was 3 bars of Theo dark chocolate and almonds. 

We confirmed how much chocolate it was while Peter was on the phone with the emergency vet. They said we should bring her in and they could give her a medication to make her throw up. Luckily, we were only out of the library for an hour, so we caught it quickly, and she had eaten dinner earlier. Peter and I took her over to the emergency vet, and they brought her inside while we waited. Good news is that the medicine did work. Bad news is that her heart rate was elevated afterwards, and one potential symptom of chocolate toxicitiy is arrythmia's. They decided to keep her over to give her IV fluids, activated charcoal to stop any more absorption for chocolate that didn't come up, and to keep an eye on her heart rate/rhythm over night. The vet said it was definitely a good thing that we not only caught it but brought her soon, and they said that best case scenario she can come home tomorrow morning if she has a good night. We're obviously scared and trying not to dwell too much, and I hope by the time you're reading this we have good news - I promise I'll post tomorrow with what happened.

 So today was a day of highs and lows. We are hopeful Stella will be ok. They will call us overnight if anything gets worse, otherwise call us around 7am with an update. Word of advice I wish we had thought of - if you asked for any type of food, but especially chocolate (that's on me) from someone and they mail you gifts, especially if you have a dog, check to make sure you know which package it is so you don't put it under the tree on dog level. This is definitely a scary accident for us to make. And, given the severity, not a big deal, but of course there are chocolate stains on the white of the tree skirt. so I had a nice clean tree skirt for approximately an hour. As long as Stella is ok I don't care though.

Friday, December 11, 2020

Getting in the Christmas spirit

It's been somewhat hard to get into the Christmas spirit this year. We aren't going to be able to see anyone in person due to covid, and a lot of planning had been knowing that. My department at work is having a holiday gingerbread house decorating contest, and since it's something both Peter and I like to do, I figured that might help. We decided to decorate the inside and outside.
We're both pretty happy with it, and it got us a little in the spirit. Peter put up our lighted star outside, but otherwise we haven't  decorated yet. We have an appointment to go cut down a tree on Saturday, and we will plan to decorate the rest of our house afterwards.

I've been getting back on the exercise bike, and have an appt with the dietician on Monday to help figure out the safest way for me to lose the weight I've gained post transplant due to steroids and such. I did the days this week, planning on everyday next week for a 20min bike ride in the morning, then adding up to 3 actual workouts in the evenings. It's definitely time


One month post transplant!

Wow.  It is almost unbelievable that it has been one month since the transplant.  So much has happened, with two weeks in the hospital, and ...