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, January 22, 2021

10 months post transplant, vaccine dose 1, and puppy!

I got dose 1 of the covid vaccine a few weeks ago. Initially, I got a headache afterwards that wasn't too bad, and my arm hurt from the shot. Day two, my arm continued to hurt, I still had a headache so I took some tylenol, and the lymph nodes in my neck were a little swollen, and I was tired so needed a nap after work. By day 3, I felt fine. I'm actually happy I was a little out of it the next day.. maybe my immune system is working! 

We had a video appointment with maternal/fetal medicine the following Friday, as the transplant team had made the comment that I might be able to safely carry a pregnancy now, and we both wanted to better understand the risks. The team was very open that if I got pregnant they would be happy to see me, but that they would not recommend it given a number of risks, both to me and to a baby. We weren't completely surprised, and to be honest, it was relieving to actually have an answer. We are looking into genetic testing to see if my congenital heart condition was genetic, and if so, to see if I were to extract eggs if we can test for it. Peter and I will have some decisions to make down the line, but at least we have a better idea about viable options now. 

The next week, this past Tuesday, I went into clinic for my 10 month follow up and biopsy. The hospital was oddly quiet - I don't know if they are booking less in person appointments, if people are being more careful, or what, but it was quieter than normal. We got in, I got my blood work done, and then waited awhile to see someone. The team was happy to hear that things have been going well, and were interested in what the maternal/fetal folks had to say. The team was open to the idea of me getting a covid antibody test a few weeks after I get the second dose of the vaccine to see if I did build up immunity. There was no sign of rejection, which is great. My next visit will be at 1 year and will be a catheterization. They did a new type of blood test, and will compare that to my biopsy results. After the next appointment, going forward, I'll be seen every 3 months and they will do the blood test. As long as that looks good, no more biopsies! I was pretty excited about that, as they are not very pleasant. The doctor took off two of my medications (yay!), so I think I'm almost at the point that I'm on the meds I will be on long term. I have 2 immunosuppressants, 2 blood pressure meds, 2 other heart related meds, one to help with GI issues, an antiviral, calcium, and a mood/sleep medication. Not too bad! 

Afterwards, I was able to set up the appointment for my second vaccine dose for next Friday, the 29th. Since some of my friends had a really good immune response to the vaccine that led to them not feeling great for a day or two, I decided it was better to do it on a Friday just in case. If I have a strong reaction it means my immune system is working well, and I'll actually be pretty pleased. 

Other exciting news is that my intern at work, who was with me for 18 months and ended with us/graduated in December, just accepted a position with our team! I'm super proud of her, and excited that she gets to keep working with us (and that she is already fully trained!) 

Wednesday I was happy that my work schedule was flexible enough that I could watch the inauguration. I was so proud to see Biden up there and hear him speak about his plans. I teared up seeing a WOMAN being sworn in as the VP. To me, it feels like I can hope again, and I'm already impressed with some of the actions that have been taken to get covid under control. 

We keep getting weekly pictures of Bosun, and he is a cutey. His facial coloring, right now, is somewhat similar to Stella's, and he has a little white tip on his tail like her as well. Apparently Australian Shepards sometimes have two different color eyes, and the breeder thinks that Bosun may end up with one blue eye, and one that is green or brown. She also said that Bosun is the largest of the litter, weighing in at 4.8lbs at 4 weeks old , and that her daughter is "in love" with Bosun because he comes running to her whenever she comes into the room. Looks like ee might be getting a pre-spoiled puppy that wants attention... We can't wait! He is already a charming little guy. 


We started making our plans to come get him. We decided that we will drive up to Deer Isle with Stella, and then go pick him up (about an hour from the island). We are going to spend the week in Patty and Jay's new (to them) cottage on Deer Isle, and get a proper peaceful vacation! We are really excited. We are going to take a few days to drive home with the puppy, so if you think you are on our route and want to do an outdoor socially distanced short visit to see us/meet the puppy, let us know! I hope you all are doing well. 

Covid is running rampant, and there are some new, more infectious variants popping up in different places around the world. Please, please be careful and wear a good mask. If its fabric, triple layer is best. Part of the protection comes from how well it seals, so if you look down and can see between the mask and your skin easily, you may want to find a snugger mask. There is going to be progress, but its going to take a while.
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