Carter’s Story

Site created on November 28, 2021

Carter was diagnosed in November of 2019 with Cardiomyopathy ARVC. This was hard to believe as he was not showing symptoms and was a three sport athlete. He then had an ICD implanted in his chest in January of 2020 as he was at an advanced stage of ARVC. He was also put on medication to help maintain or hopefully improve his overall heart health. At that time, a heart transplant was a possible  scenario down the road. 
Fast forward two years and many normal, asymptomatic days. We received a call on November 2nd that Carter’s ICD was acting up and we had to get it checked out. We spent that week figuring out that the ICD was failing and needed to be replaced. It was replaced on November 9th and after a few days in the hospital, Carter was able to return home on November 13th.  Last Wednesday, November 24th, Carter went in for some routine post-op surgery checkups and during an echocardiogram they found a blood clot in his left ventricle. He was then readmitted into ICU back down at the Mayo Hospital where he continues to be as they work to dissolve the blood clot. To make matters harder, they have told us now that a heart transplant is no longer a possibility, it is a necessity. 
The question we are now faced with as he goes on the heart transplant list is he a 1A or 1B list. 1A means he doesn’t leave the hospital until he gets a heart transplant. 1B means he could maybe go home until one is available. After a heart transplant, Carter would need to spend a minimum 100 days at the hospital or the transplant house down in Rochester. 
There are many unknowns until we know the 1A or 1B question and then some more unknowns.  Thank you all for the continued prayers, love, and support!

Newest Update

March 28, 2024

Journal entry by Sarah Julson —

Two years ago today we got the call at 4:30 AM that the perfect heart may have become available for Carter. So tomorrow; March 29th marks Carter’s 2 year heart anniversary.  That is Good Friday this year.✝️  Prayers for our donor’s family as they grieve this day while we celebrate God’s goodness and a new found strength for Carter. 
We have spent the last 2.5 days in Rochester completing annual checkups.   Overall, labs and echo showed good levels and no significant changes since Carter’s last checkup in December.  There are however; a couple things  that our care team will monitor a little more closely to be sure that everything remains healthy and happy.  A couple of medication adjustments will also be made, but Carter continues to feel great and he is excited to begin baseball practice on April 2nd!  
Read More of the journal titled "March 28, 2024"
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