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
The big day
5:15- they came in around 11:30pm last night to draw blood, then I fell asleep. Peter stayed on a bench chair that expanded into a bed. They just came in to get my weight. Me and Peter are pretty much up, so he just hopped in the shower. I should have morning labs soon, do another chloeohexadine bath, and have rounds and then I'll know more. I've been getting notifications on mychart, the patient electronic medical record, of some of the procedures they will do in the OR being scheduled. It's exciting and scary at the same time, but I'm feeling good after a surprisingly decent sleep. I'm allowed to brush my teeth this morning, but nothing else to eat or drink until the surgery.
7:00am- got a whole bunch of blood drawn, Peter helped me do the wipes, and then the nurse mentioned she needs to do charts before she went home. I realized I had two open notes from Wednesday, so since I'm just waiting I signed into a pin station in the room to get them done, and asked a colleague to set up my out of office reply. I know, I'm not supposed to be working. But, this did take my mind off of the doctor not being here yet, and now I don't have have to worry about it later. I also brushed my teeth. Just waiting for the Dr and trying not to get too hungry. . . . Just got a call from the transplant nurse coordinator and everything looks good to go so far. The extraction team is at the donor hospital. I should meet the Dr soon, then go down to the surgery pre area. Peter can come there, but when they take me to the OR at 9:30 then he can't. The surgeon wants to get me prepped so as soon as they get the go ahead they can start. I may be in the OR for hours on standby before they start.
7:41- the doctor just came in. He seems great and was really excited. The plan is to take me down soon, then back to the OR between 930-10. There is a small chance that I could be put to sleep to and wake up without the surgery happening if there is something wrong with the donor heart, but hopefully that doesn't happen. The doctor said that so far there are only 5 sites doing the dcd hearts, so even if this one didn't work I will pretty much have access to any type O heart in that pool, do it shouldn't be long. He is definitely going to take some videos and photos, but can't promise he will get everything. Apparently he puts things on Twitter with consent, so later I may be able to post links (I think this is awesome but realize that is not everyones cup of tea.)
8:46am- I was transported down to the pacu. They had remove my pants, socks, and underwear. Then I was given a "tush cush" (nurses term) which is a big jelly type sticker that goes on my bottom to protect my tailbone. They set up the pulse oximeter and drew some more labs. Anesthesia came and consented me. Then the doctor came and gave Peter some more information. At this point we are waiting for them to get started at the donor hospital. I got another IV as they needed more blood. Once I go back they will put in an arterial line before they knock me out. The surgeon told Peter the donor is in state and about 45-60 minutes away. So we are just anxously waiting. Going back now.
10:10am : They took Jodie back to prep for surgery and I have been sent to the waiting room. I'm getting regular updates as things progress, and the most recent update was at 10:18 saying that she is in the procedure room. Will post more as I get these updates.
2:00 : Hadn't heard anything so I called into the desk to see if I could get an update. They had told me they would update me when she would go back, when she went into procedure room, when procedure begins, when surgery begins, and every two hours during surgery. As of now I only knew she was in the procedure room. The folks at the desk have me this in between update at 1:45 when I called.
The heart has arrived, she's under anesthesia, and things are looking good so far. There is still a chance this could be a dry-run up until the heart and her are both in the operating room. Praying that things keep going smoothly and that surgery proceeds as planned.
3:10 : Dry run. They turned down the heart. Didn't get good readings from the donor heart. Optimistic that it won't be long until we get another offer. She's doing well and I'll see her soon. We will have more detailed information to update after she wakes up.
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 ...
You’re in my prayers today. Gwendolyn
ReplyDeleteThinking about you and Peter this morning and sending you good thoughts and hugs, (and kisses from Stella!)
ReplyDeleteSusan
Thinking of you always! *hugs*
ReplyDeleteThank you for the updates!
ReplyDelete-Susan
Our entire family is thinking of you! You even have wishes coming from my parents in Germany! Big, big hug-she is in the best hands :)
ReplyDeleteLove to all-Uli
Both of you are going to be even more ready for the next one. God bless you both.
ReplyDelete