The Aftermath of ECMO: Beyond Survival
As a newer ECMO specialist, I’m constantly learning from the experiences of those who have been through the ECMO journey. Roughly six months ago, I joined several ECMO survivor support groups and was deeply moved by what I discovered. These groups have become a window into the lives of those who have survived ECMO, and their stories have shocked me in ways I did not expect. It’s clear that while ECMO can save lives, the journey for survivors is far from over.
A Personal Insight: Discovering the Reality of ECMO Recovery
I am currently on vacation in Japan and Vietnam, and I found myself reading through the stories shared in these groups in my free time. Despite being on vacation, I couldn’t stop thinking about these survivors’ challenges. The stories ranged from physical complications to severe psychological struggles, including PTSD and anxiety. These narratives made me reflect on how much we, as a healthcare community, truly know about our patients once they leave the units we work in. The healthcare professionals I know are some of the most dedicated and compassionate individuals. While I understand that hospitals have certain protocols for following up with patients, I often wonder how much we know about the lives of patients and their families after they leave the unit. Given the restrictions in the U.S. on direct follow-up, perhaps we should explore other avenues, such as participating in support groups, to continue offering our support.
The Importance of Support: A Personal Reflection
A few years ago, I walked in on my father shortly after he had taken his own life. The trauma of that moment, combined with life’s challenges, was almost too much to bear. I leaned heavily on friends and God, sought out counseling, and joined an established support group for survivors of suicide called SOS to help me process the grief. Those conversations and the support I received were crucial in helping me find a way forward.
While it was a long and challenging journey, I gradually began to rebuild my sense of well-being. I know firsthand how vital these resources can be in recovering from trauma. It’s made me realize how important it is for ECMO survivors to have similar support systems available as they navigate their recovery.
As healthcare professionals, we know how to save lives, but we also need to consider how to help our patients reclaim their lives after they leave our care. This is why I’m interested in finding or creating the resources that ECMO survivors need—counseling, support groups, or simply knowing they’re not alone.
Physical Complications: The Price of Survival
ECMO is a life-saving intervention, but it’s not without its costs. One survivor shared how they suffered multiple strokes and nerve damage following ECMO, which left them with lingering physical challenges. Another survivor, who spent weeks on ECMO while awaiting a heart transplant, became paralyzed from the waist down—a condition that persisted even after a successful transplant. These stories underscore the serious, sometimes permanent, physical toll that ECMO can take.
The Psychological Toll: Struggling with Anxiety and PTSD
The psychological aftermath of ECMO can be just as debilitating as the physical effects. In the support groups, I’ve read about survivors who live with constant fear and anxiety, worried about their health and what the future holds. One story that particularly struck me was of a person who had survived a routine surgery that almost turned fatal, leaving them with deep-seated anxiety about catching a respiratory infection that could endanger their life. Many survivors also reported vivid and terrifying hallucinations and nightmares that continue to haunt them long after their discharge from the hospital.
The Long Road to Healing: Emotional Recovery and Support
Reading these stories has made me realize that there is still much for us to learn about how we can support ECMO survivors after they leave our care. These patients have already endured so much, and the cost and trauma of being on ECMO are immense. Access to mental health resources and support should be a given, not an additional burden. These services need to be free and readily accessible to all survivors, especially those who are elderly, disadvantaged, or non-native speakers who may struggle to access resources as easily as others.
One thing that has become clear to me is the potential value of healthcare professionals joining these survivor groups. By being present in these communities, we can answer questions and offer continued support as survivors navigate their recovery. Understanding their post-ECMO experiences could also help us improve our practice, as it could inform better care practices and follow-up strategies.
A Call to Action for Comprehensive Support
The stories I’ve encountered in these groups have reinforced the importance of comprehensive care for ECMO survivors. The journey to recovery is complex and multifaceted, and survivors need more than just physical healing—they need emotional and psychological support as well. As a healthcare community, we must ensure that all ECMO survivors have access to the resources they need, free of charge, to heal fully and rebuild their lives.
If anyone has ideas or resources they would like to share, please put them in the comments. I’d also love to hear how others have worked with ECMO survivors. Once I return to the U.S., I would like to start something useful for survivors, whether pointing them to available resources or putting together a group of multilingual volunteers—I will keep you informed once a strategy is on the table. If anyone is interested in joining me on this initiative, please message me here on LinkedIn.
For those interested in learning more or connecting with ECMO survivors, here are some groups I’ve encountered: ECMO Survivors Facebook Group, #ECMOSurvivor on Facebook, r/ECMO on Reddit, and ECMO Adults Support Group.
Feel free to leave a comment if you wish to contribute.
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Note: This article reflects my learning journey in ECMO and is intended for educational purposes only. It should not be used as a substitute for professional medical advice or guidance. Always consult with qualified healthcare professionals for clinical decisions and patient care.
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Acknowledgments:
I developed three custom GPTs, “AI ECMO Expert,” “ECMO Specialist Handover Practice,” and “Micro Definitions (MD-GPT),” for specialized research. These tools draw primarily from the ELSO Redbook (6th Edition), the ELSO Specialist Training Manual (4th Edition), various research papers, and articles. Additional research was supported by GPT-4o/o1, Claude 3.5 Sonnet/Opus, and Perplexity. Editing was performed with Grammarly. A.I. images and charts were created using Leonardo AI, DALL-E3 AI Image Generator, Microsoft Designer, and Adobe Express. Content for all articles sourced from Extracorporeal Life Support: The ELSO Red Book, 6th Edition, and ECMO Specialist Training Manual, 4th Edition.