The Road

There are two kinds of people in America—those who have been touched by the greatest healthcare machine in the world, and those who haven’t. Recently, I joined the former group — what a ride!

Backstory— After years of recurrent back pain I elected to have the surgery that no one really wants, namely, spinal fusion! And not just any old spinal fusion, the kind that involves almost all of the lower spine-the lumbar spine, L2, L3, L4, L5, and the tailbone, S1. The procedure was performed in Fresno on April 6, 2019, and at first glance appeared to be successful. Then we began a period of uneasy recuperation; it could have taken up to a year to begin feeling better. Lo, that was way too optimistic. Within two weeks of the surgery I sprang a fever of 103-degrees and booked a chair in the Emergency Room at St. Agnes Medical Center. We were ushered into a crowded waiting room where some poor soul was entertaining the assembled crowd by vomiting his ancient guts out and probably contaminating the entire room with who knows what. It was an unpleasant six-hour wait to get a blood sample drawn and another two hours to determine that the developing infection in my back might be the cause of this unremitting pain. The worst fear of patients who undergo an operation like mine is developing an infection, yet that’s apparently what had happened. I was prescribed an antibiotic and thought all was well. Sadly, we didn’t find out until much, much later that an all-out infection was silently festering in my back.

More backstory—I have Parkinson’s Disease. Recently, unrelated to the back surgery, I volunteered to participate in clinical trials for a new and improved method of so-called Deep Brain Stimulation, one that ultimately will allow the PD patient to control their own electric stimulation. DBS has been around for a while and doctors have gotten pretty good at coaxing a swarm of very specialized cells deep in the midbrain to produce a bit more dopamine, which is an absolutely necessary neuron vital to many different processes in the human body. In
ADAPTIVE DEEP BRAIN Stimulation, the patient actually is given the ability to make decisions about application of sublimely tiny splashes of electrical stimulation.

After a series of careful interviews, qualifying questionnaires, cognizance tests, and mental stability evaluations, I was selected to participate. Next came the actual implantation of tiny electrodes in my brain. This procedure required the excellent staff at the UCSF Medical Center, in San Francisco, of course. So, in early October, 2020, we drove from Fresno to San Francisco for the exciting news that I was soon to become a brain-wired septuagenarian with the potential ability to control the electric current flowing into my substantia negra and thus achieve a small bit of control over my rapidly progressing Parkinson’s Disease.
The complex procedure was performed on October 6th. I now had four holes in my skull, and electrical wires running to two medical implants under the skin near my collarbones.

But hold everything! By Friday night of the week after the DBS brain surgery, I was again running a 103-degree fever and was experiencing considerably more pain (in my lower back) than was expected (from the original spinal fusion surgery performed April 6, 2019, from which I was still recovering.) On October 19th, I was rushed to Saint Agnes Medical Center in Fresno for triage in the Emergency Room. What we didn’t realize at that moment was that a time bomb had been inadvertently placed in my spine during the initial spinal fusion operation in 2019, and it was ticking away. Fortunately, my wife had called UCSF to fill them in on my distress. And further good fortune, our favorite neurosurgeon, Dr. Doris Wang, told my wife in unmistakeable terms, “Get him to San Francisco! Tonight!” And so the search for transportation began.

Backstory — Normal communications channels apparently were never installed at St. Agnes Medical Center many years ago. How else to explain why my wife and son were never informed about my status? And yes, a neurosurgery staffer at UCSF queried my wife by phone that evening, to wit: “Why is it so difficult to pry ANY information out of St. Agnes?”

Late in the evening on that Friday night, October 20th an old, long-out-of-service ambulance was located by the nursing/transportation staff at St. Agnes. I was prepped for travel, a crew was assembled and somebody filled the gas tank. But at no time was my wife even informally told about my pending transfer. SIDEBAR: An accidentally overheard conversation in the ER by a friendly nurse who later called my family was the only inkling that a transfer from Fresno to San Francisco was imminent. My family was told nothing officially and only discovered that I was in San Francisco the next day!

Alas, like a thief in the night, I was hustled aboard the ancient vehicle, strapped to a gurney and told to keep quiet – obviously, no choice. The old bucket of bolts rattled down the road and was soon sucking up miles on the freeway. No way to get word to my worried family that I was on the bumpy road to Moffitt-Long Hospital, San Francisco.

They welcomed me in the middle of the night. All alone, seemingly without allies, I was installed in a sixth-floor Critical Care private room whereupon the bloodletting began. Backstory — It is important that the hospital culture be established and maintained immediately by new arrivals. Understand, nurses run the show, they always have.

The Angels of Mercy as they are occasionally referenced, come in all sizes and shapes. Some are the gentlest souls on earth-intent only on easing pain, making life better; others came each night at shift-change time anxious to assert maximum power over half-dead patients, eager to inflict pain if necessary, and gleeful at the prospect of control. The nursing staff preferred, no insisted, for obvious safety reasons, that patients remain in their beds at all times, no getting up, no roaming about, no exceptions. I didn’t want to play by those rules. I much preferred to get off my gurney-like hospital bed and roam among the dark wasteland shot through with a million beeps and bleeps and flashing lights from monitors of the inscrutable. The pull was powerful and I tried several times to make a clean getaway. The thing I didn’t realize was that staff had seen it all before. They installed an alarm on my bed which notified everyone with a piercing, shrill siren, and the entire nursing floor, that I was out and about. I seldom got far before the posse arrived. Frustrated each time, it became known throughout the hospital that I was not to be trusted, watched at all times, and a danger to everyone. The danger, of course, was really to myself. One fall could have serious consequences, Naturally, I did fall. I recall regaining consciousness one time splayed out on the cool linoleum floor, unable to move and wondering exactly how I had come to that juncture. It felt wonderful, I could have stayed there forever. They found me that way and rang several emergency bells of consternation. What a mess! Immediately I became a criminal patient- 24-hour guard, double bed alarms, and worst of all, the silent treatment from all staff from then on.

l learned early that drawing blood, which happens roughly every fifteen minutes in critical care, can be either a pleasant routine procedure or a virtual train-wreck involving a deadly sharp weapon in the hands of an inexperienced person in search of an innocent vein in a world of prime targets. Phlebotomy, they call it. That’s Rule Number One.

Rule two — Modesty has no place in the modern hospital. This is why, when the nurse opines that your skimpy, hospital-issued gown must be changed at the oddest of hours, the patient shall submit without question, stand or sit stock-still, chilled to the bone and-buck naked, and all of this only hours- removed from delicate spine surgery,
Rule Three— Hospital food is just for looks. You eat that stuff, you die.
Rule Four — Sleep is a rumor. A full night of uninterrupted sleep, say six or eight consecutive hours, is impossible to achieve and it does not exist anyway.
Rule five — Hospitals are places where germs live. Get over it. And try not to touch anything or breathe too deeply.

So there I was, installed in a private room in a prestigious medical center, while a faceless posse of specialists was assembled to figure out why my white blood cell count was off the page. I had a blood infection, a very serious one. Why it had grown so large, so dangerous, so quickly was the question, and duh, what to do about it to maybe save my life.

The days and nights dragged on — slowly morphing into one long nightmare of Dilaudid and Oxycodone, and frequently-soiled night-clothes and bedding. All I can recall about my residence at Moffitt-Long Hospital was beginning each long night in warm and dry clothing and finding myself soaking in urine and shivering uncontrollably in the cold grey of dawn. It was ruled essential that my back be opened up again right away. The purpose was to assess the infection, now known to be S. Marcescens Bacteremia or Serratia, which had taken up residency in my lower spine. Only an invasive, aggressive clean-up surgery would suffice because the invading bacteria was destroying bone; it required physical, no-nonsense scrubbing. Completely!

November 19th, 2020 dawned clear and cold in San Francisco, though it could have been the hottest day in hell for all I knew. My personal hell was inside the eighth floor operating room at Moffitt-Long. Dr. Aaron Clark and a dozen of his compatriots opened up my back to expose the spine. What a mess! Over the course of 8-10 hours they scrubbed away a massive infection and removed the original spinal fusion equipment and lattice which was meant to foster the growth of new bone, but in fact harbored a dangerous invader from some other world.
It took Dr. Clark eight hours to debride the original surgery area. Two full units of blood were spent to keep me alive. Obviously, I bled and bled. A-positive, lots of blood.

Then, six-liters of antibiotic wash and insertion of slow release antibiotic beads. “It looked like a war zone,” Dr. Clark later told my worried family. The original spinal fusion equipment was removed. Actual replacement and repair would have to wait. I was put on the powerful antibiotic Ertapenem administered through a Picc line, in hopes of beating back the spine ravaging bacteria. I was transferred to St. Mary’s Acute Rehabilitation Hospital in San Francisco for physical and occupational therapy. This did not work out well. I had lost the use of my right leg with accompanying unbearable pain due apparently to a nerve damaged during the emergency back surgery. The leg muscles quickly atrophied so muscles and bones just didn’t work anymore. I was out of it. I recall frequent stirring serenades of full dress kilted bagpipers marching through my room. I was dancing an Irish jig. It was a hallucination of course, a rich one; there were no no bagpipers and no commotion in the room. A decision was made to rebuild the spine immediately. And once again, in the wee hours of the night of December4th, I was sent back to Moffitt-Long Hospital.

On December 4, 2020, my birthday, by the way, Dr. Clark and his team went in again to begin the repair job – another multi-hour session to install shiny new titanium apparatus in place of the original second-rate stuff to fuse my lumbar spine.

Then, three days later, on December 7th, the team was back at it from the front (my stomach region) to perform what the original surgery in Fresno should have accomplished, namely spinal fusion of L-2,L-4, L-5 and S-1, A week later, it was off to St. Mary’s Rehabilitation Hospital to learn how to walk again.

So began my odyssey through the wilderness of rehabilitation. On December 14th, 2020, I was again transferred to St. Mary’s for two weeks, followed by five more weeks of intensive work at Pacifica Nursing and Rehabilitation Hospital also in the Bay area. I recall only that the nursing staff at St, Mary’s was kind and gentle. I stayed two weeks—as long as Medicare would allow, though I would have preferred to stay longer. Christmastime 2020 was an especially bleak period, because of the Covid lockdown my family was not allowed to visit my room. The darkness was lifted only briefly by the much-anticipated ad hoc Christmas carol recital by two of our lovely nurses. They might have been angels on earth, I’m not certain. All I recall is their kindness and soft voices. It was an evening performance, after dinner had been cleared away. A flood of familiar carols flowed from that little portable keyboard. Lovely. Restorative. Hopeful. Christmas. Peace.

At Pacifica, as our little rehab team (two lovely girls) worked through a playbook of physical and occupational therapies and exercises, some vitality returned to the dead-weight leg. Our work world gradually became quieter, brighter, better. A bit more effort yielded an equal amount of optimism and a small amount of progress. No pain, no gain. I was also taken off the intravenous antibiotic and again prescribed oral Levofloxicin until it was determined that the infection was no longer a threat.

The road to recovery is long and difficult; there were eighty-eight days in the hospital between 2020 and 2021. It included a ridiculous shell-like fiberglass contraption that was meant to protect my fragile spine in the event of an accidental fall to the ground. I was tasked to wear the thing every time I got out of bed, which took a herculean effort each time. I was mobile, but I was not mobile – imagine a Pillsbury dough boy with a heavy, hard shell around his middle trying to navigate with a broken back and weak knees. Looking back, I tallied up the missed Thanksgiving holiday, a birthday, one Christmas, one New Year’s celebration; milestones in one’s life not easily recovered and harder yet when facing the prospect of the end of one’s useful time on earth. The happiest day of my life was JANUARY 30th, 2021, when Andrew and Peggy rescued me from that hellish boot camp.

As he often does, Andrew organized a special reception. A box of donuts from world famous Bob’s Donuts in San Francisco, Equator coffee, a direct run to Marina Green and a solid hour of pure freedom by the water with a perfect view of the Golden Gate and Alcatraz. Chilly? Nah, forget chilly. Freedom. After an odyssey of pain and near dead ends, an ocean of freedom lay ahead as far as the eye could see.

Now, almost a year on, New Year’s Eve 2021, I realize I will never be the fellow I
left behind in the lonely corridors of Moffitt-Long Hospital; never walk quite the same, never bend down to pick up a shiny penny, never live pain free, never find the carefree voice of youth, or speak a clear sentence untangled and effortless. But alas, life is still good. And I am grateful for what is left; it is more than most. Learn gratitude. Live gratitude. Be grateful. Love.