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, April 14, 2020

Ups and downs

Today I had my first clinic appointment and clinic biopsy. We got to the hospital, Peter dropped me off in front then went and parked the car, we went through screening and then got a wheelchair. We headed to clinic, which was very empty.

I got my blood drawn, then we were put in a room. The transplant nurses remembered me from the pre-transplant eval and everyone was excited I'm on the other side now. First I saw the nurse practitioner, then the doctor, and then it was time for the biopsy. This biopsy was performed in clinic, but my last two were in the Cath Lab. The biopsy was unpleasant at best. I did ok through it, but it was rough. They decided to make some medication changes, so we had to wait around at the pharmacy. One issue is that my body usually wants a nap at 10:30, and it was about 11:30 when we left clinic. The pharmacy said they needed 30 minutes, so we got smoothies to kill time. We headed back, and only one prescription out of three was filled. One insurance wouldn't pay for until tomorrow, the other was in the computer twice in different ways so they wouldn't fill either without the Dr clarification. They claimed to have paged her for that information. We said just fill the one insurance won't pay for, as it was a $20 difference and not worth coming back the next day...  30 minutes later they said they have the prescriptions, but only 2 are ready, as they haven't heard from the doctor. Of course, that is the really important one. So we go back to clinic, the nurses call the Dr, who didn't get the pages, and she calls to fix it. Back to the pharmacy, where they say it will be at least 15-30 minutes. 

By this point my body is done. I'm tired, hungry, and I start sobbing. Peter takes me to get food and water to take my afternoon pills. This helps a little. We go back to the pharmacy, and 40+ minutes after they said, it's finally ready. 

We get home and I collapse into bed. Peter takes the call from my nurse coordinator with instructions for tonight as I'm out of it. I sleep a few hours, then get up when Peter brings me my evening meds. We do a simple dinner and I just veg on the couch.

I guess we will have our ups and downs. Today was rough because I couldn't listen to my body. I'm hoping a good night's sleep will help reset things.



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1 comment:

  1. Uli and familyApril 17, 2020 at 12:42 PM

    I’m sorry you had such a rough day! You are doing such a good job taking care of yourself and it is just so frustrating that the pharmacy was so disorganized. Hope you have a better day today !

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