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.
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.
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.
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