Vine climbing building

Waiting for the big muscle to heal

Part 3 of a memoir of heart failure, open-heart surgery and complications

At some point in my recovery at the acute-care facility, a cardiologist tells me that the muscles in my body will not recover any faster than the big muscle, my heart, recovers.
I do not understand those words at the time, but as the days of immobility wear on, I realize that the body heals lockstep with the heart; my overall recovery hinges upon my heart’s recovery, and it is very weak—my heart function was at 10 percent or less when I entered Allegheny General’s heart failure unit in February 2021.
My first big step toward mobility, taken in early April while a patient in a Morgantown, W.Va., acute-care hospital, ended with another “cardiac event.” I fear triggering another incident by attempting to walk. I am still hooked to a feeding tube, a catheter and IV lines, so there are practical obstacles, as well. I am so tired of using the bed pan, actually just a plastic tray that cuts into my skin, and the embarrassment of that arrangement. I want to walk to the bathroom, close the door and take care of business in privacy. And I want to eat.
Being cleared for eating involves working with an ENT specialist, who must convince the rest of the medical team that I am capable of swallowing. A camera is inserted through my nose and into the labyrinth so my swallowing action can be observed on a screen. I am presented with increasingly challenging items to swallow. At the end of the session, I am cleared to start eating solid food, although the tube must remain in my stomach in the event I do not receive sufficient nutrition through eating. It is a miserable procedure, but I am motivated to get it done so I can eat. I choose oatmeal and grape juice for the meal.
It is the most disappointing meal I have ever tried to force myself to eat. The juice tastes like a cocktail prepared in a college chemistry lab; the oatmeal might as well be a sauce of plaster and kerosene.
Anesthesia, antibiotics and other drugs have altered my sense of taste; I am extremely sensitive to any trace of chemicals. Even plain water, the kind the hospitals serve up in those quart-sized jugs with the flexible plastic straw, tastes like a pesticide factory’s discharge. Although I am supposed to drink eight glasses of this stuff a day, I struggle to choke down eight ounces. The IV tubes replenish my fluids.
Three times a day, a staff member from the dietary department comes in with the menu, and three times a day I push away the trays after taking one bite from each offering. Nothing except apple sauce resonates with my palate. All the foods I once loved are repulsive. Worst is anything with a tomato base—pasta and tomato soup go from being staples to taste-bud enemies. Ice cream, pudding are tolerated, but I consume such small quantities, the treats have little impact on my nutrition. I remain on the feeding tube. My weight falls below 110 pounds.
Days are torturous and boring. The television in my room has only a handful of channels that run shopping shows and repeat the same programming day after day. I watch every episode of the few Heavy Rescue and American Pickers programs that repeat daily. Worse, there is no wireless connectivity; then again, I am too weak to hold and use a laptop. What little bit of communicating I do is done through brief text messages on my cell phone. Reading is out of the question because, I am so weak I cannot hold a book. Mostly, I sleep in a drug-induced haze. Nights are restless and insanely long, and no matter how late I stay up hoping to become sleep, it never occurs. Sleep comes shortly before 4 a.m., when the first round of oral medication and the phlebotomist arrive. From then on it is chest x-rays, respiratory therapists sucking out the gunk, doctors and interns, more blood draws and more tests and bags of drugs.
Perhaps the most encouraging event to occur during those early days in acute care is an Easter weekend visit from my son and grandson, who bring me a fleece throw with a paw-print pattern and a stuffed animal that looks like my dog, Edison. Those items bring me much comfort in the days to come, silly as it seems for a 66-year-old man to be sleeping with a stuffed animal. But that gives me hope that I will one day be strong enough to walk in the woods with him again and cuddle up with him on the couch. And it opens many discussions with the nurses, technicians and doctors who share my love for dogs.

A 66-year-old man with a stuffed animal. Ridiculous, but it gave me comfort. Acute care facility, April 2021. All photos by Ruth Feather.

Scars, seromas and Rich

The tracheotomy tube is removed April 15. The hole begins to heal over, although infection around the spot where the pipe rubbed against my skin still oozes from the wound. I am down to one bed sore, which is irritated by the metal bar between the mattress sections on the bed.
A false aneurysm pops up on my right arm at some point between the heart surgery and my return to Morgantown. None seems to know what it is, what caused it or what to do about it, despite doctors and interns alike stopping in to see “it.” All they can suggest is that an artery was blown out during a procedure. I name it “Rich,” in honor of the respiratory therapist who becomes my best caregiver and advocate for getting me out of acute care.
Scar tissue forms where the lines for the ECMO and surgical paraphernalia were inserted. My body looks as if the undertaker in my alternate reality had indeed applied his assortment of needles to it. Today, when I look at photos of myself hooked up to all those lines and machines, I do not recognize this very ill man; I feel intense sympathy for him and wonder how he could possibly be alive in that condition. Today, I need only touch my abdomen to confirm I am he; the seroma is his, as are the zipper scar and swollen lip, the white patches on my legs from the tape that held the multitude of lines in place for weeks and removed the top layer of skin when they were ripped off.

Tubes and IVs left many scars on my body. Allegheny General’s heart failure unit. My hands were constrained in mittens to keep me from pulling out the tubes and needles.

As my 40-day Medicare limit approaches, doctors talk about moving me to a rehab hospital that can provide the physical and occupational therapy I need for independent living. The roadblock is that no place will accept me unless I can walk for a few steps, from the bed to a wheelchair. A physical therapist visiting from another hospital and named Tim assures me that I can do it and that the trepidation that I am experiencing is normal. He gives me exercises to do, works with my atrophied legs and shows a kindness and compassion I’d not received from the acute-care physical therapist. With his strong arms to lean upon, I pull myself up and take the first steps. I get dizzy and beg to return to bed. We try it again. My legs ache. It feels as if I am trying to walk on a thousand beach balls floating in a pool. Perhaps my subconscious reverts back to some 66 years earlier, when I was first learning to walk. Back then, it was a short fall to the floor and the floor was grass or carpet; my mother was there to catch me. Here, it is a sterile, hard surface that offers only injury and even more surgery and hospitalization if I collapse.
During one such attempts, a doctor takes note of my progress as I take three or four steps. While the other physicians feel I am not ready to move on, he becomes my advocate for release to a rehab facility. And after being rejected by a couple of facilities near the hospital, I am accepted at a nursing home/rehab center in late April.
Because I had heart failure when they attempted to walk me, I must wear a “life vest” that will sense if my heart stops beating and deliver a shock to restart it. The vest is attached to a huge battery pack that I wear around my neck or off the shoulder and makes any attempt at walking all the more difficult because it throws me off balance. It adds to the discomfort of being “skin and bones,” but it is a condition of my release.

10 worst days

On April 27 I leave the acute care facility for the rehab hospital, also in Morgantown. The 10 days in that facility, aside from my alternate reality experiences, are the worst of the entire ordeal. Perhaps it is because I am much more cognizant of my surroundings than I was when drugs dulled the pain and reality, but even a drugged person would recognize this as a nursing home posing as a rehab hospital.
My first night there, I am left alone in an otherwise vacant wing sealed off from the rest of the facility. My attempt to summon a caregiver is ignored. The phone in in the hall rings and rings, but no one is there to answer it or my call button. It is as if no one knows there is a patient in that wing. Indeed, my wife finally has to call the office and tell them that I am in the wing. Five hours pass before I am even acknowledged or assessed by staff.
The facility is severely understaffed; one nurse is responsible for an entire wing. One day I witness her work three shifts straight. Because of Covid-19, I am isolated, and Ruth is not permitted to visit me in my room. An outdoor meeting is arranged behind a Plexiglass divider outside the facility; the aide who comes to take me outdoors in a wheelchair doesn’t take the time to put my feet on the footrests and they drag on the concrete. I repeatedly ask her to stop, but she tells me to lift up my feet and keeps moving. But my legs are so weak they cannot lift the feet that once carried me on great adventures and helped me earn a living. They drag and bump along the pavement as the wheelchair is pushed around the building’s perimeter in search of my wife’s car.
The best thing to come out of those 10 days is that a physical therapist gets me to the point where I can walk down the hall with a walker. But there is no occupational therapy, to speak of, aside from making sure I know how to write a check (seriously). Because there are no showers in the facility, I am limited to the sponge baths that I detest; learning how to shower and shave myself again will have to be done on my own, at home.

For three days in a row, I walk the entire length of the hall, as far as I’m allowed to go due to Covid restrictions. I even work on climbing a single step. I tell the staff and my wife that I am going home; I am checking myself out.

Ruth tells me I’ll have to come home in an ambulance, she can’t handle me in the car, and there are two stone steps leading to our front door, steps I cannot navigate. Further, there is no hand railing to assist my climb. My options are stay in the rehab hospital until I, hopefully, gain the strength to walk up steps and get in a car, or go home in the ambulance.
The morning I am released, I fall while trying to get myself into the wheelchair after using the restroom. The racket attracts more staff than I’ve seen the entire time I’ve been in the place. The nurse attending me is certain that I’ll be back. I need more time there, more therapy, they tell me as the ambulance arrives to haul me home.

Coming home, May 7, 2021
Coming home to 6 Seaford, May 7, 2021

Going home

The ambulance ride is frightening. My mind struggles to separate the new reality from the alternate in which my mind has been living. I fully expect the ambulance driver to disregard the home address and deliver me to an abandoned building in Sheffield Township, Ohio, where burly men strangle me with wire, drain a gallon of blood through this hole in my neck and laugh at my misery. I have known fear before, but never like the fear born of those hallucinations. I fully expect to wake up from this “reality” and find myself back in that dungeon.
I count off the minutes on Interstate 68 once I feel the acceleration of the ambulance tell me we are on the four-lane. From the gurney, I can see nothing. There is relief when the ambulance slows after 15 minutes and makes a left turn onto what I hope is Route 26. Further relief when I feel the ambulance rock to the right a minute or two later. We are on the Brandonville Pike, and I am going home.

It has been 94 days since I’ve been there. My vision of it comes not from the three months we lived there, but the nights I were chained in its nursing-home basement to an iron bed. I expect to see a security fence around it and extensive remodeling.

Instead, it looks just like I left it.

I am carried into our house on a gurney and assisted onto the air mattress bed that my wife prepared for me downstairs. It is the evening of Friday, May 7, and I am finally home.
The bed feels amazing. Although my body aches, I have no appetite, my digestion is seriously messed up and I look horrible, I am so grateful to be home.
I sleep better that first night at home than I had in years. Prior to the heart surgery, I woke up dozens of times each night. In the hospitals, it was impossible to sleep with all the intrusions and noise. This night, however, I sleep and sleep. I wake up before my wife and study the ugly peach-colored ceiling and tan walls that remind me of those in the hospital rooms. For a minute, I find myself believing I am back in acute care. My eyes scan the printer’s box on the wall and all the mementos of my life stashed in their cubicles. My cat jumps on the bed and curls up next to me. The log trucks roll down the pike in front of our house, I hear Ruth stirring upstairs. It all seems so strange to me, yet vaguely familiar. I could get used to this.

I thank God that I am alive, home and in the loving care of my wife. I thank God for all he has brought me through. The doctors can’t explain it, and the only way I and Ruth can is prayer, lots and lots of prayer.
As the drugs flush out of my body, I improve my intake of fluids and food and learn to do everything all over again. One of the great moments of those early days is when I garner enough strength to push myself up from the edge of the bed and get into the wheelchair without a “boost” from my wife. But the day she helps me get out of the wheelchair and onto a seat in the bathtub is the greatest. Feeling the warm water on my head and back is both physically and emotionally refreshing. It takes 30 minutes to get me in there, showered, dried off and dressed, then another 30 minutes for me to shave myself while sitting at the kitchen table. A few days into my return home, Ruth gives me a haircut, the first since January.
Life is far from perfect, but it is good. I am grateful for each little comfort of home, act of self-care and the loving attention of my wife. Only one thing is missing: Edison.

Continued February 25

headless man in ice

The sawblade embedded in my neck

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.

Breathing tube.

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.