Test Results & ICD Surgery

I had another round of tests on May 10th. Results came back stable again. My disease progression was declining at a very steady pace for a few years. And now it’s decided to take a break. My cardiac index has held steady at 2.1 for about a year now. I need to be 1.8 to be hospitalized. They don’t know why or how I have stabilized. But they know my decline will start up again at some point. I am working to see this as a gift of time. I’m still sick enough to stay at status 4. I’m just not sick enough to get hospitalized yet. And hospitalization as a status 1 or 2 is the only way I will be matched for a new heart.

My ICD alarm sounded yesterday which means it’s time for surgery. The device clinic called yesterday to let me know they are aware of the alarm and someone will call me next week to schedule the surgery. Even though I knew this was coming, hearing that annoying alarm was a bummer. I feel like this transplant journey has been a marathon. I’ve been running for two years now and getting so tired. And now I have to climb a hill in the marathon. I know I can climb it. I’ve done it before. This will be my fourth device implant. I just don’t want to have to climb that hill again. My ability to balance my fatigue and symptoms with my responsibilities at home is enough of a challenge. The addition of surgery and recovery that brings even more limitations for a few weeks just bums me out. Especially with Ava finishing up middle school soon, heading to Washington DC for a class trip and starting summer camps. But I have a good support system. And I know everything will be okay. I’m just not looking forward to it.

Thanks for listening to my pre-surgery woes. I’ll keep you updated on the surgery timing and how it goes. Thanks for reading, friends.