Updated: Mar 27
Today is Survivor Series Saturday!
We are back with another story for our Survivor Series! On certain Saturdays during the month, we will share stories from survivors or caregivers within the Aortic community.
Today we bring you a story about surviving trauma from having a congenital heart defect and multiple open heart surgeries from Ken Levine.
Ken shares in his blog, details of how he experienced and endured open heart surgery more than one, many years ago. Ken was treated for aortic stenosis and received an aortic valve at a very young age however, his hospital experience is very much still in the forefront of his mind.
My story begins when I was born in 1957. I am now 63, healthy, active and a survivor. I endured three open heart surgeries for an aortic stenosis that developed when I was two months old. My first surgery took place way back in 1969 when I was 11, another at 16, and my final one for the placement of a prosthetic aortic valve in 1976.
Now, considering the astronomical advances made in cardiac surgery in the last forty years, I wish to give the reader a glimpse of experiences with cardiac surgery fifty years ago.
Back then (it is true- dinosaurs were extinct), the equipment used in 1969 bears consideration. Cell phones? No. Home computers? Uh Uh. Electronic equipment, lasers, stents, implants through the veins? What? Echo cardio grams? excuse me (call security)?
Every six months, from the time I was three years old until sixteen, I went through the following ritual: The EKG machines were as big as dining room tables. They were run by switches, lots of switches. Now when I was “hooked up" to the EKG they poured a cold tube of lubricant all over my chest and used two or three rubber bulbs, like small clown noses, which were squeezed to make a suction connection on my chest. To make connections to my wrists and ankles? I kid you not but imagine those "macho'' dog collars you put on dogs called "Beast" or "Duke," the ones with half-inch spikes placed all around the neck. That is what my ankles and wrists wore and to which the electrodes were attached to. They in turn set in one-inch-leather straps.
The cables to connect me to the EKG? Imagine going into the trunk of your car to retrieve starter cables to jump a disabled vehicle. FOUR POUNDS of those cables were dropped gently on my chest, the ends placed in the electrodes, tightened, and I was ready to go. At eleven years old, all I could do was lie still.
The last part of this process was the actual recording of my heartbeat. A long metal stylus, about 2 inches long, ticked as my heartbeat. The stylus released India ink as the paper rolled out from underneath the machine. When the process was complete, the technician had to roll up the fifty feet of paper, literally rolling it around her shoulder and elbow, like one roll up a garden hose.
Now, I share this walk down memory lane for a few reasons. First, to humorously show how very far cardiac monitoring has come. Also, it serves as a segue to continue my survival story. Although my story has a happy conclusion, it is vital for me to share what happened to me when counseling was not available for survivors of open heart or other cardiac procedures.
During the years of my open-heart surgeries, no one, or so it seemed, ever thought about the emotional side of cardiac surgery. In 1969, the only "counseling" my parents and I were given was the simple fact that I had a fifty/fifty chance of survival. At this time, really, the surgeons could "scrape" some of the clogging material from my aortic valve.
When I awoke from surgery, I was in an ICU, my head and arms strapped down, and I could not swallow. What was happening? No one told this 11-year-old what to expect after the surgery. All I could see were images of people in white gowns pass me by. When my parents showed up, I could see they were as petrified as me. Wires, tubes, and cables surrounded me, and I could hear behind me what I could only imagine was a panel for some nuclear submarine.
My parents really did their best to assure me; they had no idea this is what they would walk into. I felt sad for them and started crying, but the only thing to come out were my tears. I remember writing on a piece of paper, "why can’t I talk?" They told me. I also wrote "thirsty" and my Mom could only wet my lips.
No one told them. No one told me. I was in the ICU for 5 days, then finally, finally, brought up to my own room. My chest felt like two elephants were sitting there, but I understood why. Parents, bless them, they came every day mostly looking for doctors to tell them SOMETHING, but they were there for me, looking after me. My scar started itching and the lotion was heaven. I will say I felt okay. Until one afternoon, while I was watching something on the black and white T.V., this person walked in, no introductions, comes over and suddenly pulls out this four-foot flexible rubber tube out of my stomach and leaves! I was in shock. I did not know it was there. I was too young to swear, but I felt miss-used, attacked.
The next day, another person walked in and said, "I'm just going to remove a wire in your chest." Suddenly with a resounding “zzzzziiiiPPPP" I feel a five-foot soft wire unwinding from my heart. Yeah, he left, with no “How ya feeling," or "Here’s what’s going on." He just walked away from a kid who shivered in fear.
I was there a month, came down with a respiratory illness, (go figure), and in May, nervously got into the car and rode home, dazed, confused and wondering why I felt detached from the world. I did not know it then, but I was experiencing trauma, the beginning of depression, and the birth of severe panic disorder. I don't and will not go into the details of the next two surgeries...except to say the experiences were pretty much the same- very scary, (the second operation left me with a valve that failed) and finally, in 1976, a prosthetic Bjork Shiley was sewn in, and it is still going strong after 42 years. It’s cool to watch it on echo cardiogram, in living color!
Unfortunately for me, there was no therapy or counselling, no one saw any connection between three psychotic breakdown hospital stays, panic attacks that lasted hours, or two suicide attempts, and correlation to the trauma, PTSD depression, and dissociation for forty years. Until two years ago however, when in 2018 I was yet again hospitalized for suicidal thoughts and severe agoraphobia. This time a psychiatrist looked at my past historical events and said, "You’ve had three open heart surgeries? Wow! Have you had any counseling? for this?" I started crying, really crying, and the past 40 years of hell came flooding over me.
Okay, here is the good conclusion and the call for families, patients, and children involved with any cardiac care to ABSOLUTELY get counselling, or psychotherapy...to be heard.
Through very intense and on-point therapy I received during my four month stay, I learned not to be afraid of my body; I practiced saying "no" when panic occurred, I learned how to be present, grounded, self-soothing, calm, and am still practicing the many skills needed to heal. It is a long road, but a road worth walking, one moment, one day at a time. I realize that counseling of many types are occurring these days, and I am so glad...AND I guess I wish to express here how vital it is to speak up and politely demand counseling BEFORE, DURING, and AFTER any cardiac experience.
Look, any surgery to the heart IS a life changing event. I believe that the body knows what to do, how to heal; the body is an awesome machine. However, the brain, our emotional well-being, is what we need help with. It’s literally asking the body, “What’s HAPPENED to me?!” Lots my friend. Your body just came out of some incredible surgery, and even though it appears everything is going well, it’s a traumatic experience. EVERYONE, adult, child, teen or elderly person needs to learn to be at peace with the experience.
My generation basically told me, "Okay, you had this heart thing, buck up and get back in the saddle." Not anymore. It is, dare I say, okay to feel violated, intruded upon, scared, depressed, freaked out... any emotion is your own that must be shared. Children especially need to be involved. My 11-year-old self would have preferred to express myself and be helped by professionals, then to "buck up" and feel like a ghost for forty years.
I wish I could reach out to you all. Imagine a three-month-old getting a new heart?! That was a dream, surgeons used to dream of and yet, here we are. Then, I remember e-mailing through Mended Hearts an actual heart surgeon telling the community he was feeling depressed.
You all now know my response.
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