Thank you so much for visiting our Caring Bridge page! This has been such a wild rollercoaster and we thought this may be the best place to keep everyone informed! As many of you know, I have been living with cardiomyopathy since 2014. What is cardiomyopathy you may ask? Basically, my heart muscle has weakened over time. This was a condition I was born with. It's a genetic mutation that runs in our family. As a child my sister and I had open heart surgery to repair holes in our hearts. My mom had the same surgery. And honestly, we kinda thought that was the end of our heart journey. We even got "released" by cardiology doctors when we were fifteen. It wasn't until my senior year of college that our genetic condition was discovered after my mom has some arrhythmia issues and had to get a pacemaker/defibrillator. All of us were tested and it was discovered that we had a mutation in our NKX2.5 gene that caused arrhythmia. My mom, sister and I all had to get pacemaker/defibrillators and started being followed closely by cardiology.
Over the years, my heart has seemed to deteriorate despite the best efforts by my doctors at Emory. In 2017 my heart had a significant dip in function. My ejection fraction dropped from a "healthy" level of 65% to 15%...which meant my heart wasn't pumping blood very well. I began seeing the heart failure team at Emory and although my energy level wasn't wonderful, it was manageable. Then in 2020, despite getting the covid vaccine, my entire family caught covid. We were blessed. We all bounced back well from the virus and it didn't seem to be a big deal. But my body seemed to struggle to recover in regards to my heart. A month after getting Covid, I was admitted to the hospital. I had significant fluid build up in my lungs and around my heart. The doctors put me on diuretics and in three days, I lost 14lbs of fluid. It was clear that the virus was the tipping point for my heart. From there, measures to manage my heart failure were increased.
The knowledge that transplant was in my future was inevitable, but the hopes were to "kick that can down the road" for as long as possible. Unfortunatelt, despite amazing doctors and careful monitoring, the time for transplant has arrived. Furthermore, my insurance asked me to go to a tier 1 transplant center. The closest one is Vanderbilt University. At first, I was devastated over this news. It was so far away and I was very comfortable with my team of doctors at Emory. But as my dad often says, "What we think is the worst news often is one of God's biggest blessings in disguise." And Vanderbilt was just that! We have been blown away by the hospital and their amazing care. The doctors have been nothing short of fantastic and the care has been excellent.
Last week we finished the final testing needed to list me on the transplant list. From there it could take a few days to a couple of months to get a new heart. Ryan and I will have to move to Nashville, TN for 3-6 months. Out of all of this, that is the biggest, scariest part. Leaving our kids, home, family, friends, neighbors and pets seems so overwhelming. We are so blessed with an amazing support system. I have to have a 24/7 caregiver after transplant and the outpouring of volunteers while Ryan manages trips between Nashville and our home to try to give the kids some normalcy has been overwhelming!
To cover costs of housing and expenses, we will be starting a t-shirt fundraiser soon. I am one of those people who HATE to ask for help, but I have amazing friends and family who want to do something! We will use this Caring Bridge page to update you all on our process and where we are in our journey! We love you all so much for all your love and support. We also want to thank our God who is carrying us through this entire process. One of the verses I have clung to is Joshua 1:9, "Have I not commanded you? Be strong and courageous. Do not be be afraid; do not be discouraged, for the LORD your God is with you where ever you go."
I know...WE know...God has this. He has been with us before we ever knew that transplant was in our future. We have already seen His hand at work in this situation and I can't wait to share with you all that He is doing in all of this! Know I'm always available if you have any questions! I know how it is following Caring Bridge pages! Sometimes you want an update SO BADLY and there isn't one! I'm striving not to be that way on here!! Love you and and above everything, we covet your prayers!
Hey, guys! We got great news yesterday! My biopsy showed ZERO REJECTION!! And my CAV and cellular rejection was negative as well! Such a huge praise! God is good! But I have to say, He would be good if my results were not positive either! His ways are different from mine but I’m so thankful my plans and His aligned!! It’s easy to praise Him when we get the answers we want! It’s the trusting Him in the bad news that really grows us! I’m very thankful this wasn’t a “growing time” result! Trusting God with literally every heart beat! ❤️
My first week home has been super busy getting things in order around the house and running errands. It’s crazy how much energy I have despite still healing! I don’t have to take naps in the afternoon! I didn’t realize how tired I was and how much i compensated for my heart failure. Every day I’m getting stronger and I’m so very thankful! Love you, friends!!
Patients and caregivers love hearing from you; add a comment to show your support.
Help Andra Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Andra's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
