Six months ago I woke up in the Cardiac ICU having no knowledge of what happened. No knowledge of how close to death I was. All I knew was the excruciating and agonizing pain I was in. The screaming, the struggle to breathe. That’s all I knew at the moment. My mom took my hand in hers and explained the surgery didn’t go to plan. That I suffered a catastrophic injury that nearly cost me my life.
Since then, I’ve faced so many complications. So much lingering pain. Still lingering issues with my lungs that require 3 inhalers a day. Complications that have caused my hernia repair to fail, and thus my parastomal hernia to reoccur. Complications of a wound dehiscence. An incision infection that was initially dismissed by the Nurse Practitioner at the surgeon’s office. “It’s just a surface infection”, is what i was told. Complications and actions that have led to trauma. There’s days the pain around my incision is a 9, there’s days it’s a 4. It’s always a dull ache though.
I can barely walk these days. I can barely last 10 minutes outside in the heat and humidity due to my lungs. Bibasilar Atelectasis..still at 6 months post op. The fatigue is awful. Simple tasks leave me utterly exhausted. Is this my new normal? What quality of life do I have?
I had to go to a local wound care clinic to get help for my incision to close back up. Daily dressing changes with packing. Weekly Wound Care appointments for debridement. Do you know how that feels? It’s not pleasant. Having to use special packing and dressings to prompt healing.
I’ve also received no accountability from the cardiology office. As it turns out, someone had shut off the home monitoring for my pacemaker March 2023. Had it been on, and monitoring my device, we could have caught the malfunctioning of the device when it began in August 2023. Instead it wasn’t caught until January 23, 2024. However, it was not known the leads had frayed, and the risk was tremendous.
See, Biotronik has a monitoring alert system for their devices. If the home monitoring isn’t connected, the Doctor’s office is notified by Biotronik. So to ask, who ignored the alerts? How was it missed that my home monitoring was not connected, thus not transmitting data from my device nightly. I’ve asked this many times. I’ve used my voice not only as a patient, but an advocate to get answers. I’ve received none.
I’ve read the operative report so many times. I’ve learned what I could about what happened. Maybe that’s the PTSD. Though there’s still so much I don’t know. One big question, how was i stable when pulled from Bypass in the OR, but on a ventilator less than an hour later? WHAT HAPPENED? I’ve never gotten an answer regarding that. There’s only one note in my paperwork about it. Absolutely nothing else.
I’ve tried to transfer care. I’ve tried to find a cardiac team. Unfortunately I’m in a situation where I need a specialized team. This requires travel. Which is what I’ll do. I want a better quality of life.
Six months of wanting answers. Six months of trying to piece together what happened. Six months of trying to process and heal the trauma. I think that may be the hardest part. The flashbacks, the memories of being in such agonizing pain not knowing what is going on. The anger, fear, anxiety, sadness at times is so overwhelming.
I get frustrated. I’ve built my name in advocacy. I’ve built my own voice, and have advocated for myself and my community. Yet in this I feel voiceless. I’m not though. Maybe they wish I were, but I truly feel there needs to be accountability for this situation. Accountability for the abysmal post op care, the astronomical medical costs I’ve incurred due to the complications. The medical costs have affected me tremendously. Complications that may be permanent.
Six months of wondering how this happened. We need transparency in healthcare. We need accountability. This is a situation that possibly could have been prevented if the malfunctioning lead was caught sooner. I refuse to just let this go. I refuse to be voiceless any longer.
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