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, March 8, 2020

We just got the call

12:06pm - we just got the call that they found me a heart. I'll post more later, but if everything goes well I'm getting a new heart tomorrow.

 { Addition} - we had gone to our Lutheran church this morning, then went to our Community church this afternoon.  We were chatting with people when we got the call, and were able to tell the folks who were still there.  Everyone was excited and there was a lot of praise, as we had been praying earlier for things to go smoothly.  They held an impromptu prayer circle, and then we were off to get home and do a few more things.  We are grateful to have such supportive faith communities, and it was really special to be with members of our small group when we got the news. 

Then we headed home and started calling/texting people.  One of my good friends came over to help finish a few more things, and another work colleague stopped by to grab some boxes that just got delivered and ended up helping to put in couch slip covers.  Our next door neighbors had agreed to take Stella during the day this week since we are having the contractor start tomorrow, and were happy to take her early.  Our across the street neighbors agreed to let in the contractor tomorrow so Peter can be here the whole time.  We are thankful to have such great neighbors and friends.Then it was time to head towards the hospital.  We realized that in the craziness, we did not eat lunch, so stopped and got a late lunch and then went to the hospital.

4:47pm - we are currently sitting in admissions at Duke Hospital and figured it was a good time to give an update. The donor is a 28yo male. I don't know from where exactly, but was told not in state but nearby. This will be a dcd heart, which means the donor is not technically brain dead. Tomorrow at 9:30am they are taking him to an OR, removing life support, and then have to wait 5 minutes before the surgical team can come in. If he passes quickly, and the surgeons can get the heart out within 30 minutes, then they will hook the heart up to the transmedic OCS (heart in a box) to get it pumping and do a really close inspection. If it looks good, which we should know by 11, then the surgery is a go. If not, it's a dry run. This heart is available because I signed up for the research study on Wednesday. It's crazy how quick this is! 

We are looking forward to getting upstairs and finding out more. Peter will be updating the blog when "big" things happen, but will most likely not have the bandwidth to be replying, although well wishes are welcome. Please pray that things go smoothly and pray for the family of the donor.

8:30pm - I got brought up to one of the cardiac inpatient floors.  They had given me a HUGE room, which would have been great if I had to be here for awhile.  After getting some vitals, I met the first nurse, who was really nice .  She ran through what needs to happen tonight, which was to figure out my INR  - the rate of how much your blood clots.  Because of my artificial mitral vale, I have to be on coumadin and keep my blood pretty thing to keep me safe from clots.  However, thing blood is not a good thing when you're having surgery.  So, they need to figure out how thin it is so they can figure out how much Vitamin K, the medicine that counteracts it, to give me.  Once they get my INR to a normal rate, then they will give me IV blood thinners (heparin) until the surgery.  Coumadin stays in your blood for days, while heparain is very short acting and only works while you'e getting it in the IV.

The transplant PA came in and I signed some consent forms.  I asked if the doctor would be willing to take a video of my new heart beating on the 'heart in a box', and get a photo of both my current and new hearts.  The PA texted the doctor, who said he will absolutely take the video of the new one, and will try to remember for the old one. Then the IV nurse was called to put in an IV  and draw some labs.  I ordered dinner, and then they came in and did an EKG.  Since I am sometimes a 'hard stick', the IV team brought an ultrasound and used that to find a good vein in the my middle arm.  They put in the IV, drew some blood, and then we had some downtime.  We have been trying to reach out to people, and I took the opportunity to call my Pastor from RI.  While I've had, and have, great Pastors, she is the one who I have most connected with, and I wanted to pray with her tonight.  It has been overwhelming and Peter and I wanted it to be just us, but being able to check in with her was really helpful.

They got back my blood test and figured out what they needed to do.  I was given a IV diuretic as I'm holding on water weight and they want to get it off, and then the Vitamin K.  While they were finishing, I updated my advance directive and started updating the blog. The IV just finished, and now I need to do a chlorohexidine wash.  This is a chemical wash cloth that will help to get rid of germs for tomorrow - I'll do once tonight, and and then do it again in the morning.  Then I have to wait for labs to be drawn at 11pm.  After that I can try to get as much sleep as possible before.  As of right now it is 10pm.

The plan tomorrow is that Peter will update the blog as the big things happen - so when I'm taken back, when they start, etc.  So keep on reading, and we appreciate your understanding of us being slow in responses.

Prayerfully yours,
Jodie and Peter
at
Labels: ,

3 comments:

  1. BrendaMarch 8, 2020 at 9:41 PM

    - You are In our hearts you two- praying for a good sleep for you both-& peace- God is there with you.

    ReplyDelete
  2. UnknownMarch 9, 2020 at 1:21 AM

    Thinking of you both and sending my love. Aunt Elaine

    ReplyDelete
  3. Tina TinleyMarch 9, 2020 at 10:54 AM

    Prayers from adolescent eg staff.

    ReplyDelete

Subscribe to: Post Comments (Atom)

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 ...