Part 2 of a memoir of heart failure, open-heart surgery and complications
The journey home is one of 10,000 steps, and the first one is always the most difficult.
On March 23, 2021, I am released from Allegheny’s heart failure unit to an acuity unit in Morgantown. I recall nothing of the ambulance ride or the first days in acuity care.
At the urging of my wife, the ventilator has been replaced with a tracheotomy tube while I am still in Pittsburgh, and that was the reality into which I awoke.
A monstrous piece of machinery is attached to my throat; I visualize a handsaw blade protruding from my neck. The opening hurts. My upper lip, swollen and cut from being trapped between the ventilator tube and my teeth for week, is painful. Then again, my entire body aches. “This is not my body,” I think.
I am encouraged to cough up the accumulation of mucus and blood in my lungs, and I go through box after box of tissues. The coughing and purging continue day and night. the respiratory therapists tell me it is the path to healing, to eventually dispensing of this tube, the periodic suctioning and inability to speak. This whole thing can be described in one word: gross.
My mouth is beyond parched, but the only moisture they offer is a damp sponge on a stick. I beg for American Concord grape juice served over crushed ice, and in my alternate reality this wine is used more powerfully than Eve’s fruit to entice me into torturous situations.
“It is so wrong for them to deny you grape juice,” an attractive woman from my past life tells me as I am confined to a bed in our home, now a nursing facility. I am kept locked up there in a basement room and confined to an iron bed. “Let me help you. I am going to give you the key to the cabinet above the bed; in the cabinet, you will find grape juice, as well as all the crushed ice you want. Just wait until they are all in bed, then use the key and help yourself.”
When the house is still and I am certain I won’t be detected, I reach for the cabinet. But I lack the strength to pull myself up in bed far enough to grasp the door handle, let alone maneuver a key into the lock, retrieve the beverage and pour it over ice. The key slips from my hand, and the woman appears, mocking me for my pathetic condition and inability to fulfill the simplest of my desires.
The burley men return with the ambulance to take me back to the hospital. In my preceding experiences with them, they tried to kill me by slowly draining the blood from my neck into a discarded gallon milk jug. The procedure lasts throughout the night and is performed in an abandoned house in Sheffield Township, the site of 1971 murder. One of the men keeps watch over the operation, explaining it is retaliation for a newspaper article I had written about that murder while I was employed as a reporter.
the man removes the spiral wire from my reporter’s notebook, straightens it out and proceeds to thread it in and out of my abdomen—not once, but twice. Electrodes are then hooked to the wire and electricity applied to the captors’ pleasure.
These men work on an ambulance squad, and at any point where I need to return to the hospital, I must endure the ride and their sadistic pleasures in the back of the ambulance. They are in no hurry to get me to the hospital.
I am bound to a post outside a barn and my car started a few feet away from me. I could escape, if I could walk, but I am crippled and forced to watch my only opportunity to flee from this hell consume the gasoline that would fuel that escape. The car sputters, and as that hope fades another horror befalls. Teenagers, in their rebellion against high taxes and student loan debt, hold dozens of children hostage in the barn. My grandson is among the hostages. Their parents surround the barn; a lost love appears on a wire stretched from the barn to a tree and declares herself fairy goddess of the teens. Inside the barn, the youngsters are stuffed into luggage and gun shots randomly fired into the trunks. The riddled luggage is carried out to the awaiting parents; I see my son and his wife open their trunk; I see the lifeless body of my grandson.
This journey from hell passes through many horrors.
April 6, 2021
My wife works near the acuity hospital and comes to visit on her lunch hour and after work. One day she asks a nurse about one of the medications I receive. The nurse replies, “It’s for his Parkinson’s.”
My wife informs her that I do not have Parkinson’s. It was never part of the diagnosis. So why am I receiving this medication?
The medication is withdrawn from my diet of pills, as is an anti-anxiety drug that has made me groggy.
Shortly thereafter, I recall it as a Tuesday, my mind transitions from the alternate reality in which I’ve been living. It is like walking from a dark room to one filled with fog.
In this new reality, I am waking up from the open-heart surgery of Feb. 12. I only can groan displeasure for “no” and use my hands to resist interventions that I do not understand or that play into the horrors of my alternate reality. I rip out the tracheotomy tube, set off alarms and thus summon angry therapists to my bedside throughout the night. The incisions from the original surgery and subsequent procedures ache. My backside burns with the pain of bedsores that are periodically scraped with scalpels; I dread the sight of the nurse who specializes in wound care.
I lack the strength to so much as pull myself up in bed, let alone get out of it and walk to the bathroom. The weeks of intravenous antibiotics destroyed the intestinal flora, and I suffer horrible diarrhea with extreme constipation. I feel shame, despair and anxiety. Simultaneously, I am filled with great gratitude, for I am alive, and that is no small thing.
Each April day brings a new goal, a new hurdle, that must be cleared before I can dispose of the tracheotomy tube, drink liquids, eat, start physical therapy and rid myself of the feeding tube and other medical intrusions. When I am given the ability to speak through a speaking valve placed in the tracheotomy tube, I use my voice to praise God for sparing my life. This becomes my mantra whenever doctors, nurses, technicians and visitors stop in my room to examine what is becoming an inexplicable miracle of survival.
As I slowly adjust to my new reality and regain the ability to speak, I ask my wife the hard questions: When was my grandson’s funeral? How are the other children who were kidnapped? What about my father? Were we able to bury him? What about my dog, which I had witnessed being killed in a storm? What about the pets we had to leave behind during our visit to Canada? Were we able to rescue them? How is her business doing? Why is there a nursing home in our house?
She knows nothing of this reality and patiently helps me unravel these stands of falsehood from my cord of experience.
The burly men out for revenge still pursue me at night. A high fence surrounds our house, but the men manage to breach the protections while my wife is away. They take me to a meeting of volunteer EMTs, who place me in an iron bed within sight of food and challenge me to get out and walk to the table. I am starving. The meeting is closed, the building locked, and I remain in the iron bed, immobile.
I keep a vigil by father’s body as we hide out in a veteran’s hospital.
I am constantly retrieving my wife from a tangle of wires in a projection booth.
I am driven to a deserted building on the perimeter of a cemetery and left there to die, my legs unable to support my weight as I tumble out of the car.
I am a patient in a hospital in a communist nation. My doctors are more interested in torturing than healing. One of them is an American, serving out a sentence and about to be released. But the negotiated deal sets me free rather than the doctor, who takes revenge on my body.
I notice he is carrying a white notebook, and convince my mind this is a dream, a hallucination. My mind retreats from the hospital, but I am thrust back into that circuit where I am an electron. I have hallucinations within hallucinations; the journey from hell takes me through purgatory once again.
Code blue, again
I feel an intern touching my swollen ankles, assessing the atrophied muscles in my leg.
“What a waste” as he mumbles and leaves the room. He looks like the doctor who I left behind in that communist-nation hospital. I struggle to distinguish reality from where my mind has been for the past two months.
The physical therapist says it is time to get me on my feet and attempt to walk; I resist, but she insists. My legs, on which I have not stood for more than two months, are swung over the bedside and I am assisted into a sitting position, then lifted up to stand. My legs struggle to withstand the weight, then collapse. Suddenly, everything is dark, and I tumble back upon the bed. Alarms go off; my heart has stopped beating.
A dozen doctors and nurses descend upon my room and spill into the hallway. I wake up to an audience. I am given a few minutes to stabilize, then, inexplicably, the therapist insists upon repeating the scenario. Once again, I lose consciousness.
Is this reality, or just another alternate scenario? No, this is for real, my wife assures me.
I come to dread the physical therapist’s visits. I want to walk, but nobody seems to understand just how weak I am. I am still on a feeding tube and cannot so much as take a sip of water. I first need to learn how to simply stand, and it is my respiratory therapist and a physical therapist from Mon Health who patiently move me toward this first step to self-reliance. On a Sunday afternoon, the respiratory therapist and my wife help me into a wheelchair, and I am taken for a short ride to the atrium. I look out over the greening landscape through blurry eyes. From my window of my hospital room, I had seen only gigantic exhaust pipes and other hospital external infrastructure. The sight of trees in bloom, grass still spotted with snow and healthy people walking across the parking lot overwhelms me.
The brief journey exhausts me, as well. I realize how many steps I must take before I can go home and care for myself. I am so ashamed of my appearance. I weigh 30 pounds less than I did before the surgery; the skin hangs from my arms, legs and face. I have not shaved in weeks, and my hair is long and curly. I cannot imagine any person loving me, yet here is this beautiful woman who comes to visit me daily. The staff speak highly of her and her devotion. And, after the incident with the Parkinson’s medication, she asks even more questions about my treatment and care.
She is my best friend and guardian; she is my wife.
Continued February 19.