The Interplay of Medical Trauma and Pre-existing PTSD
When your emotional baggage gets too heavy to carry alone
Here on Substack, I write about a lot of things. My primary focus is – or is supposed to be – on surviving and thriving, living your best life after making it through the worst of life’s traumas. Since May is Mental Health Month, I thought it would be timely to discuss how medical trauma fits into the overall realm of trauma, at least from my personal perspective. The message of Hope & Healing is my overarching goal.
Offline, I try to do the same. I’m a volunteer moderator for a couple of live heart transplant support groups hosted over zoom twice a month. I’m also the moderator for some online heart transplant groups. Since I have nearly twenty years of experience in this transplant life, it seems appropriate that I give back by sharing my knowledge with others who are newly treading upon this path.
In one of the recent meetings, the topic of trauma came up. Nearly everyone in attendance agreed that they had some form of PTSD from their transplant journey. This would be identified as “medical trauma.” It’s not unique to the world of heart transplants. It can happen to anyone who has endured a major illness or injury. It can also happen when a person has to undergo a series of medical treatments, such as for cancer or post-transplant follow-up.
Everyone experiences trauma in different ways. Some people feel minimal impact while it becomes life-altering for others. There is no predictor of how greatly someone will be affected by the medical experience.
I used to joke that my heart transplant was the least traumatic event of my life. There was likely an element of denial involved in my perception. But there is also a grain of truth.
Trauma and I have a long history together. Childhood trauma – Complex PTSD – rewired my developing brain to a permanent fight or flight setting. To paraphrase Yoda, “There is no relaxation. There is only fight or run away.”
For those familiar with the ACES test (Adverse Childhood Experiences), I scored a perfect 10 out of 10. I can’t help but be an overachiever. Things didn’t get much better after I ran away from home as a teenager.
By the time I was 38, living in the hospital and waiting for a heart transplant, I was exhausted. I had been fighting to survive for my entire life – or at least prepared to fight thanks to the crossed wires in my brain.
Would you think I was crazy if I told you that I kind of enjoyed living in the hospital at that time, not knowing if I would get a heart in time to keep on living? Maybe enjoyed isn’t the right word. But it was a relief, almost a vacation.
For most of my life, I had to fight, fight, fight to stay alive.
Working multiple jobs, scrambling to pay rent to avoid eviction and homelessness, affording my medication. When I finally secured a stable job with health insurance, I found myself thrust into the position of caring for my elderly grandmother while simultaneously balancing a demanding job and a crumbling marriage. Crumbling is such a nice euphemism. I lived every day under threats of physical violence. Because of my badly wired brain, I put up with that shit for way too long.
Maybe the overwhelming stress of that period helped to push me into heart failure. Trying to be everything to everyone without being there for myself literally killed me.
During my time in the hospital, I felt safe and cared for. The doctors were genuinely concerned about my health and survival. The nurses were kind, even helping me bathe and dress myself when I was too weak to do it alone.
The food was not terrible, and I was over the moon with happiness that I didn’t have to summon the energy to prepare and cook every bite of food I ate. Because of the dietary limitations of my heart failure, I couldn’t just hit the drive thru for something to eat. Every gram of fat and milligram of sodium had to be measured and limited; thus, I prepared all of my meals from scratch. In the hospital, the kitchen took care of following the cardiac diet.
Quite possibly for the first time in my life, I felt safe enough to ease out of fight or flight mode. I came to the hospital for my body to be healed, but the security and care I received helped to also heal my spirit.
That security and care helped me to come through that heart transplant and into a remarkable recovery. My body healed and I took up running for the first time. My old heart couldn’t support such activities. I suddenly enjoyed the feeling of a body that could perform the same activities as the people around me. This healed my confidence as well, and I returned to work, reaching new heights in my career. Looking back, I took on too much and pushed myself too hard, but that’s who I am, or who I was.
The second heart transplant shattered everything the first one healed.
The surgery was a success. This heart, the third one to beat in my chest, is a strong heart. It wanted me to get up and run as soon as it began pounding against my ribcage. She raced and raced, sometimes 200 beats per minute, stuck in atrial flutter. An ablation fixed that problem, but she communicated her frantic desires to me - pounding against my ribcage like a drummer in an oven, beating as she burned.
After the surgery, while still on the ventilator, I developed ICU Delerium, formerly known as ICU Psychosis. Maybe the sedative caused hallucinations. But I was convinced that I was being held prisoner. I believed that my transplant surgery had been cancelled, and instead, a nefarious gang of human organ traffickers intended to remove my organs and sell them on the black market.
The crossed wires in my brain decided that I had to fight tooth and nail to survive. I became combative, punching and kicking anyone who approached the bed. This led to me being restrained hand and foot, for my safety as well as theirs. Those restraints only pushed me further into delusion, causing flashbacks to a time when I had likewise been held prisoner in real life. Punching and kicking turned into knees and elbows and head butts. Nurses had to care for me in pairs, one to perform the task and the other to play defense.
Looking back, I feel deeply ashamed about how I behaved. It wasn’t my conscious choice to fight like a cornered animal. The history of violence from my earlier life came flooding back once the drugs tore down my carefully erected barriers, resurrecting the fight or flight response. Denied flight, I turned to fight with every ounce of strength I could muster.
Nearly seven years after my psychic defenses were torn down by this episode, they still have not been fully restored. At least I no longer have flashbacks. For a year after my time in ICU, I sometimes woke up unsure of where I was, leaping from bed to make sure I wasn’t back in that room. When I travel and wake up in a strange room, I sometimes still have a moment of panic before I orient myself to the correct time and place.
I recognize the symptoms of Medical PTSD in myself. The simple act of getting an IV can push me to the brink of a panic attack. The smell of antiseptics inside the hospital makes me want to vomit. When I had the flu earlier this year, I was told if it gets worse to go to the Emergency Room. The thought terrified me, and I refused to leave the safety of my bed and my home.
During the talk of medical trauma in the support group, I remained silent about my own experiences. I’m there to listen and help. I’m not there to scare the shit out of people with my own dysfunction. I arrived at the gate with my own baggage in tow. Like they tell you at the airport, you must maintain control over your own baggage at all times.
Our group discussed how important it is to find a therapist you trust to help you through the transplant process and recovery. We spoke also about family therapy to help not only the transplant patient but also the caregivers. Organ transplant is a life-altering event for everyone involved, not just for patients but also for everyone involved.
When we spoke of therapy in the group, the question came up on how to find a therapist who is qualified to address the mental health ramifications of a critical or chronic illness. I’ve never found a mental health professional who specializes in this topic. There are trauma-informed therapists, who primarily deal with the kind of trauma I experienced in my early life.
My search for a therapist who specializes in Medical PTSD found nothing.
When I had my first heart transplant, it almost felt like it was a non-event because I was “pre-disastered.” The amount of trauma I had endured in my life leading up to the transplant dwarfed the surgery itself. But that second transplant blew my doors off, knocking down the carefully erected barriers that protect my mind from itself.
Although the medical advancements in the world of transplantation are astounding, and lifesaving, there has not been an equivalent push on the mental health aspect. Some transplant programs do have staff psychologists to work with transplant recipients, but the number of therapists is not enough to keep up with the need for their services.
When they are transplanting new organs into our bodies, doctors are neglecting the most important organ of all – our brains. Perhaps we can help them to focus on this unattended need of many critical illness patients.
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I’ve had some struggles with anxiety and panic attacks after having a brain tumor removed. Nothing like what it sounds like you’ve been through, but I can certainly relate to struggling to find help.
Thanks for this powerful and vulnerable post.