Guest writer Denise Redeker of the Heartfelt Help Foundation talks about organ-transplant-PTSD. She’s a bit of an expert – she had a heart transplant. Here’s Denise….
Denise’s Story
If you had asked me even a few months ago if I carried any PTSD from my heart transplant surgery, I’d probably have responded with something non-committal, like “sure, don’t we all have some form of PTSD?” But I’ve been giving it a lot of thought lately and I’ve realized…it’s complicated.
Some time ago I was at the dentist. The hygienist was cleaning my teeth and calmly asked me if I clenched my jaw a lot. I had no idea. But I thought about it and realized that clenching was a defense mechanism. Now that I was aware of it, I noticed it often. When things got tough, or painful, or if complications arose, I would clench my jaw and then take the next step forward. It was my version of girding my loins before battle. I soon realized I was even doing it in my sleep (I still do), which explains why on some mornings I wake up with a sore jaw.
“Post-traumatic stress disorder symptoms may start within one month of a traumatic event, but sometimes symptoms may not appear until years after the event. These symptoms cause significant problems in social or work situations and in relationships. They can also interfere with your ability to go about your normal daily tasks. PTSD symptoms are generally grouped into four types: intrusive memories, avoidance, negative changes in thinking and mood, and changes in physical and emotional reactions. Symptoms can vary over time or vary from person to person.” - MayoClinic.org
Stress Responses
It got me thinking about other ways I hold my stress and what my triggers might be. Turns out, all of my senses carry some form of trigger for me. I’m a heart transplant recipient, and memories of what I’ve been through will hit me at odd times in odd ways and stop me in my tracks. So, I thought I would start processing all of that, right here, in public. Oof – this is going to be way out of my comfort zone, but here we go.
Touch
My right elbow…. I spent so much time in the hospital, that my right elbow was raw from resting against the rough hospital sheets (and probably from IV’s, PICC lines, and other things as well). To this day, if I put my elbow down, I’m immediately brought back to being in a hospital bed in pain.
Claustrophobia
We transplant patients have been intubated (sometimes multiple times), we’ve been confined to a bed, to a room, and when we feel confined now, in any way, a little panic sets in and we start to look for the exits.
We recently went hiking to a favorite spot we’ve been to many times. On the way to the spot there are caves you can explore. The caves were closed; they were too narrow and tight to social distance. My husband was disappointed, but me? I was quietly thrilled.
Sight
I just recently had a right and left heart catheterization. When I did I realized that the mere sight of the cath lab makes my breath catch. I had to do some intentional breathing exercises to get past that.
My body doesn’t play well with most IV medications. I’m super sensitive to dosage amounts and to dyes. I have yet to go through a cath (I’ve lost count how many times) without needing a lengthy recovery afterwards due to some complication or another.
Organ transplant PTSD - In the journal of General Hospital Psychiatry there is an article out of the University of Washington titled “Posttraumatic Stress Disorder in Organ Transplant Recipients: A Systematic Review”. In this review, researchers concluded that a substantial proportion of solid organ transplant recipients may have some degree of PTSD symptoms. They further said that PTSD negatively impacts health-related quality of life (HRQOL) and could possibly increase the risk of mortality.
I have a friend who can’t see lightning without being taken back to the shock of her Implanted cardioverter defibrillator (ICD). More than once, while driving, a lightning storm occurred and she triggered.
I have another friend for whom seeing a dish of hard candy takes her back to the trauma of a treatment because there were always dishes of hard candy in that space.
Sometimes even a color can be a trigger. For some it’s that particular shade of blue you always see in hospital gowns. We take in so much of the world through our eyes. It’s how most of us begin the processing of our trauma.
Sound
Beeping. When I had my first ICD surgery, I was told “when the battery wears down it will make an audible beeping noise.” And it did! Within two years, I started hearing a beeping noise coming from my chest. But it was too early for my battery to be having issues. I had to have my ICD replaced three times before transplant.
If you’ve ever spent much time in the hospital, you know that beeping is a fairly constant sound. Even today, three years after my transplant and no longer with an ICD, if I hear an unexplained beeping noise, I have to stop and figure out where it’s coming from. I have stopped conversations to ask, “do you know where that sound is coming from?”
Smell
That disinfectant smell of the hospital. The smell of a lidocaine patch. Certain medications, especially the liquid ones. The weird, almost burning odor that accompanies some procedures.
All of these and more take me back to trauma. I take in trauma through all of my senses. Above all of them, smell memory is more vivid than memories of events, or even people.
The Link Between Smell and Memory - This was explained well by Scientific American. “Your olfactory bulb runs from your nose to the base of your brain and has direct connections to your amygdala (the area of the brain responsible for processing emotion) and to your hippocampus (an area linked to memory and cognition). Neuroscientists have suggested that this close physical connection between the regions of the brain linked to memory, emotion, and our sense of smell may explain why our brain learns to associate smells with certain emotional memories. Many of these odor-driven memories may further be childhood memories because those years are when we experience most smells for the first time.” - Everyday Einstein, Sabrina Stierwalt
Whether it’s the smell of your mom’s pie coming out of the oven and the warm feeling that brings with it, or the smell of the liquid antifungal medication that makes you recoil – smells can take you back to a place and time quickly and without warning.
Taste
The salty metallic taste you get when they flush your IV line with saline. Just writing those words brings me back to a hospital bed and a time of trauma.
For me, though, the worst one is applesauce. After my transplant, I had to relearn how to swallow. They would feed me applesauce dyed blue, and then thread a camera up my nose and down my throat to watch the swallowing process. I can’t eat applesauce without feeling the camera being threaded up my nose.
A lot of transplant patients have to take liquid antifungal medications after transplant. The horrible taste of nystatin sticks with you for life. I have a friend for whom the taste of mint gum is a trigger. She used to use that gum to get rid of the taste of the Nystatin! Even ice chips can bring you back to some of the worst times of your life.
Heartfelt Help Foundation is a 501(c)(3) nonprofit which aims to assist transplant recipients afford the full scope of recovery expenses, including housing, transportation, and home health which are not covered by insurance. We believe the transplant recovery process is a crucial time that should be spent focused on recovery, rehabilitation, and achieving additional years with family and friends.
How I handle this…
This isn’t medical advice, and it might not work like this for you, but here’s how I’m working through it.
Acknowledge there is trauma:
Once I recognized it was there, it lost some of its power. Being honest with family and friends and acknowledging the trauma with them is critical for me. I create an expectation where no one will tell me that I shouldn’t feel a certain way, or that I should “suck it up” and just be grateful.
Counseling:
An amazing choice that has helped me build a new, stronger foundation. I still recognize my trauma, but I have a game plan to deal with it when it pops up. Creating a game plan is something you can do with your counselor.
Faith:
For me, my faith is the primary way I deal with the trauma and triggers associated with transplant. Taking everything to God and asking for His guidance through it all has gotten me through so much and He continues to walk right beside me throughout this adventure.
Mindfulness/Prayer:
I’ve had to carve out time and create a quiet space to pray, meditate, or journal. It’s part of my process.
Please don’t get me wrong, every morning I get to wake up, my first emotion is gratitude, but we can hold both the gratitude and the trauma together at the same time.
No matter the health struggles that you’ve faced, whether it’s organ-transplant PTSD or something else, the medical trauma that follows can either limit you or be kind of freeing. You can face it head on or pack it away. And that, friends, is up to you. Trauma will take as much control over your life as you allow it to.
Let’s come up with a game plan to deal with trauma. I’m no therapist, but I know your team has a great one, and that’s a good place to start.
Denise Redeker: Founder & CEO of Heartfelt Help Foundation
After a complicated surgery in 2018, Denise received a new heart, and a second chance at life. Once recovered, Denise knew she wanted to give back to the transplant community. She began volunteering with Donor Network West, the local OPO (Organ Procurement Organization), but it wasn’t until September of 2019 that she found a way to help that was desperately needed. Denise learned of a patient whose transplant was being delayed because they were unable to pay for post- transplant housing. Something as solvable as money shouldn’t delay a person’s second chance. She enlisted some friends and hosted a fundraiser and raised $12,000 to help that patient (and even had some in reserve for the next ones), and Heartfelt Help was founded.
“I am so grateful for my second chance and feel obligated to make it count in a way that gives back to the community that no one asks to be a member of, but for which all are grateful.”
From the editor
Additional reading:
Psychiatry.com – What is PTSD?
Shirley Davis’ article on Patients Rising – “Mental Health and the Quest for Quality Care”
Patients Rising’s “Mental Healthcare: What Are the Roadblocks?”