World In Motion: Part III -- Navigating the Healthcare System

WORLD IN MOTION: PART III 

Navigating the healthcare system…

By Lu Sobredo 

I am in recovery after a successful craniotomy. My world is no longer spinning from vertigo. But I was nearly put at risk while I navigated the healthcare system. 

I could only say goodbye in my thoughts and in my heart. I couldn’t travel. Whether a few-mile-drive to the chapel or a few thousand miles on an airplane, it was not in the cards for someone who had surgery only weeks before. Winter storms may be long gone. Yet, I mourn. Not because winter exited. I mourn because this spring, three beloved members of my extended family left this earth within days of each other.  (See back-story: World in Motion: Part I and World in Motion: Part II).

Springtime had softened the sadness. Then June arrived. The heatwave came too soon and caught my family by surprise. The heart grieving and the body still recovering from surgery were caught by surprise. One weekend we drove from Central Valley to the San Francisco Bay Area, thinking we could escape the heat. Warm weather unusual for the coastal area welcomed us. Not the relief we sought.

Then, there’s the nagging cough. The stubborn cough from an early summer cold lingered for its dear life without regard to mine. For every time I coughed my ribs ached, so did the right temple near the edge of my incision from surgery. A cough-induced headache threatened to ruin my disposition. But my largest concern was the threat of pneumonia. Not a good pairing for my RA condition. My primary care physician assured me my “lungs are clear.” He sent me for chest x-rays just to be sure. Now we wait for results. 

Waiting is a familiar plot. The follow-up visit with my neurosurgeon scheduled in two weeks can’t come soon enough. The hot weather, residuals from colds and trappings of major medical conditions appear keen to push me over the edge. To which my husband urged: “ Cry. It’s ok to cry,” after he finished giving me one of two weekly injections for my RA. So, I cried. 

Sobbing sometimes can be incredibly cathartic; so can reflecting on my hard-fought triumph of sorts when navigating the world of being an in-patient at a hospital. 

University of California Davis Health | Medical Center. ©James Sobredo 

Hospitals and I were never a good match. With hospitals, I never wanted a long term relationship. My late mom would tell me that even as a toddler, I cried when heading to a medical clinic or a hospital for a vaccine. I dreaded needles until I was ten. As I grew older, I’ve learned to cope with the phobia.

I managed to avoid hospitals as an adult, except for a couple of surgical procedures as an out-patient during the last decade. That meant staying in the hospital recovery room for a few hours, long enough to safely wake up from anesthesia. The only time I actually spent two successive nights in the hospital was when our precious baby arrived one month earlier than due. He was considered a premature birth. So baby and I stayed one additional night for observation. It was medically wise to make certain there were no complications to baby’s health. That was a little over two decades ago. 

HEALTHCARE PROFESSIONALS ARE NOT ALL ALIKE

This time around in March 2019, I stayed in the hospital a little longer. I suppose having your skull partially cut open to remove an invading mass required it. Luckily for me the tumor turned out benign. At first, the neurosurgeon anticipated for me to stay in ICU (Intensive Care Unit) for a day, for a total of a four-day hospital stay. 

Son By My Side After Surgery. ©James Sobredo

A surgical procedure could be stressful enough to family members. Commuting on California freeways would be another source of tension. Aware of a two-hour roundtrip drive between home and hospital, I reserved a hotel room for hubby and son. Conveniently, there is a Marriott Hotel on the medical center grounds. The out-of-pocket expense was worth it to have family near me. I could not have surmised that I would encounter another jolt navigating the healthcare system. That happened. I definitely needed my family’s presence as it unfolded. That experience serves as precautionary warning for navigating our healthcare system in the future. This wasn’t the first time I played patient advocate for myself. Sadly, it might not be the last.

I was extremely grateful, in fact tickled out of my head (no pun intended) when my surgery went so well. I salute the awesome surgical team! The mass was totally lifted out from under my skull, I actually bypassed the need to be in ICU. I stayed overnight in a private room of the  post-op area as no beds were open at the Neurological Surgery Unit on the fifth floor. 

Twenty-four hours later, a bed was vacated and I finally had space to move into. But, before leaving the post-op area on the first morning after surgery, a female physical therapist (PT) and a male vocational rehabilitation specialist unexpectedly showed up at the foot of my bed. I presumed they were there to assess my physical status after surgery. The PT asked if there were stairs at my home. I said, “Only two steps to go up the front porch. Otherwise, we have a one-story house.”

The PT demonstrated how one goes up the steps with a walker. The guidance was to ease my transition from having full hospital care to being cared for by family at our home. My one and only son, now a young adult was by my side to ensure a family member took note of the instructions. The vocational rehab person never engaged with me. He spent his time chatting with my husband, and not about my medical condition. 

Despite being in pain from craniotomy, feeling loopy from medications and quivering from residuals of the anesthesia, I still cooperated. I  practiced on using the walker. I struggled to focus on instructions given,  but stayed determined to push myself to move with a walker. I persisted. I was mostly motivated by the need to walk to the communal bathroom with help from my son if a nurse is occupied. There was just something uncivilized about using the commode inside the post-op room. Irrational, I know. The PT undoubtedly observed how motivated I was to use the walker. 

Much to my chagrin, the PT had concluded I was ready to go home the next day. Although, I don’t recall her saying anything to me or my family. Had this PT conducted a follow-up visit the next day, she would have observed I was weaker. My balance was off. And walking even with a nurse’s assistance to use the ensuite bathroom was a struggle. I felt heavy pressure, numbness, and pain in and around my head. The pain medication suppressed the symptoms up to a point. I felt helpless.

My medical readiness for release from the hospital was being discussed on the second morning after surgery. I sat in the bed, stoic. My family  was in disbelief. The female nurse-in-charge was hesitant regarding my release, but it wasn’t her decision. The male Nurse Practitioner (NP) representing my neurosurgeon was taking the PT’s report to heart. Additionally, he obtained input from my morning nurse. This was the same nurse that as soon as she took over my care, I felt unsettled. As it turned out, my instincts were right on, as her input proved hazardous to my well-being.

About the morning nurse: she would never get a nomination from my family for Nurse of the Month, not even Nurse of  the Day. Don’t get me wrong. Although a bit abrupt when she spoke, she did take care of my basic hospital needs for a couple of hours: dispensed necessary drugs, delivered my breakfast and additional ice water, and accompanied me to the bathroom a couple of times. Regrettably, she spoke unwittingly about her own flu/cold/cough, and how she shows up at work even though she still has symptoms. Hinting at her own unselfishness “to be there for her patients” did not shout altruism to me. Listening to her ramble about herself? Extremely  annoying. And this was before I realized what she had said to the NP. But I kept a polite interaction, regardless of my pain from surgery and discomfort from having her around.

I suffer from RA. My immune system is compromised. After an invasive surgery, an unknowing dim-wit exposed me to flu germs. I had other colorful words for her besides “dim-wit.” I stowed those away in my thoughts. And she had the temerity to whisper to my son, although within my earshot: “Watch out for your mom’s changes in mood, memory and temper because of the surgery.” 

Then, she casually asked my son: “Have you noticed when talking to her how much she doesn’t remember things, could get short-tempered or just different?” 

To which my son quickly said in retort: “No! And what do you mean? She is the same mom even with all that she’s gone through.” 

Not the least bit amused by the conversation, my son gave me that glance. The kind only understood between parent and child after we’ve reached the same conclusion: someone had lost her marbles. Sonny later shared how he found her manner disturbing, judgmental and gossipy. I, too, wondered if it was her place to explain to my son what the possible effects of the surgery might be? Hubby was at the hotel during all of this, but would join us later. This morning nurse was only with me for a few minutes during the span of two hours since she had other patients in her care. But the damage to me could have been long lasting.

Later that morning, when my surgeon’s NP announced to my family that  that I would be released that day after only two nights in the hospital, I became teary. I objected when I found out the decision was based on the PT’s report and feedback from the morning nurse. Never mind that I was in severe pain, shaky, and unable to get myself out of bed safely. I was fatigued from the throbbing in my head, and there was still bleeding from the incision. 

The NP must have taken my objection into consideration. He left the room. I presumed, to review my records. And as I suspected, to consult with my surgeon by telephone.

Just as I started to plan a more vigorous protest (all this as my head was throbbing despite numbing drugs), by happenstance a patient advocate representing patient rights came by to see me. At this point, she did not know I was slated for release. She explained that hospitals are often under pressure by insurance companies to reduce patients’ hospital stay.  That the patient or patient’s family has the right to protest if such circumstance occurred. Without wasting time, my husband immediately called the phone number given to us by the patient advocate. We launched the appeal before the hospital could officially release me or demand my signature.

Thank God, I am one of the fortunate ones with a robust health insurance. Thank God, the charge-nurse was cautious and supportive. I suspected the NP spoke with my neurosurgeon who also later called to support me on receiving one or more days of hospital care as needed. My family and I were convinced that early release from the hospital could have potentially put my safety, recovery and quality of life at risk.  It could have alarmingly placed at a disadvantage my family’s ability to take care of me. As my husband pointedly expressed to the NP and to the charge-nurse, my early release would have demanded from him medical skills for which he was not trained to give. It’s not like he would be attending to someone who has the flu. Seeing my physical and emotional state, my husband was especially perturbed that he would likely drive me back to the hospital emergency room once we got home. 

I spent one more night at the hospital.

The next day, I cringed at the thought of seeing the same morning nurse. My aggrieved spirit felt that she came from the dark side bent to disrupt the flow of positive chi. Was I ever relieved that she did not return the next morning. All the other nurses and charge-nurses acted professionally: knowledgeable, kind, efficient, and focused only on administering care. Not in the least bit self-absorbed. Kudos and gratitude to them. 

A crucial lesson learned from this experience: know your patient rights, and question decisions rendered by medical staff if different from yours or your family’s better judgment. Listen to your body. There are healthcare professionals who are not necessarily after your best interest. I know this, not just from this recent experience. I have been my own patient advocate for six years since being diagnosed with severe RA, an autoimmune disease without cure. I count my lucky stars that I’ve found compassionate and skilled doctors along this fragile health journey. I’ve considered not describing the morning nurse as being from the dark side or as being despicable, and the one PT as being incompetent…One never knows what affliction or grief they are under. My spirit nudged me otherwise. I trust their behavior was an anomaly.

LIFE AFTER SURGERY: NOT AS DISMAL AS IT FEELS

Two-nights on the fifth floor meant listening to non-stop activities by the nurses’ station. It dawned on me how peaceful it is at home. During the nights at the hospital, I heard doorbell-like sound from patients summoning nurses to their room. One male child’s voice groaned from a room nearby. Another restless patient must have walked up to the nurses’ station a dozen times. Judging by his voice, I would guess he was a middle-aged male. He was incessant in asking for more morphine. It’s like listening to a broken record all night. I could hear the  nurses at various times firmly telling him that he has already taken the maximum dosage that could be given safely. His doctor would have to authorize anything stronger. The one time the nurse asked if she should call his doctor, he dejectedly said, “No.” But even with all the commotion disturbing my insomniac self, I appreciated the additional night at the hospital. Where medical expertise is a touch of a button away. 

I shared the hospital room with two roommates on two separate nights. Watching them and listening to their personal stories helped me realize that my health situation was not as dismal as it feels. Besides, I have lived long and traveled far in comparison. We did share one thing in common, we were patients with a life-changing diagnosis and/or surgery. Evident was the resilience, even though we each had a unique way of handling our health circumstances. Resilience loomed large amidst the hustle and bustle, the noise and distractions in a hospital. My conclusion? A hospital is not a place where true healing occurs. And still the human spirit rises.

My first roommate was pleasant and soft-spoken. She had a genuine curiosity about her. Her brain surgery did not require cutting her skull. The operation was achieved through her nose. She was in writhing discomfort, and would quietly ask the nurse for pain meds. I believe she was 23 years old, a college student who had to delay taking courses due to health issues. I listened with empathy. She expressed a longing to be part of her divorced parents’ ethnic communities. Both sides had rejected her while growing up because she was of mixed race. Although, there was now effort within the separate communities to connect with her. She spoke of the outdoor adventures she’s missed because of her medical condition. I didn’t totally comprehend her diagnosis and I chose not to inquire in deference to her privacy. We promised to stay in touch. Facebook has made that possible.

After the medical decision to keep me in the hospital, I noticed my second roommate arrive that afternoon, soon after the first one was released. My newest roommate was a petite 25-year old dynamo oozing nervous energy. I suspected that if not feeling unwell, she could speak a mile a minute. She spoke in a raspy voice, somewhat high pitched with a fast cadence despite her apparent fatigue from surgery. Her repeated requests for the nurses to take her to dialysis did not go unnoticed, although not as swiftly as she would have liked.

The brightness in the room from its expansive window bothered her. So, I had my son lower the blinds. I smiled at her refusal to eat hospital food. She instead asked her step-mother to bring her a McDonald’s breakfast by morning. Momentarily I forgot about my own pain as she enumerated her medical challenges: debilitating foot issue at 8; kidney failure at 22; and spinal vessel brain issue at 25. 

She was distraught by the itch on her head caused by blood that had dried up on her scalp since her brain surgery. I noticed dry blood (specks of it) on my own hospital gown from my incision. Too insignificant in the larger scheme of things, I ignored it. But she was agitated by the dry blood swarming her bed linens. It made her itch all over. So she asked for new bed covers, and for more meds and lotion to numb the itch and pain. I felt helpless for her. Her impatience to forces outside her control was exhausting to watch. However, her fighting spirit was unmistakable. I wished her well when I said my good-bye the next morning, the morning of my release from the hospital.

Heading Home from the Hospital. ©James Sobredo

THE HEALING JOURNEY CONTINUES

It was my first night home from the hospital on March 17, 2019 on St. Patrick’s Day; a holiday stereotypically celebrated with alcohol. No alcohol consumption for me. Sedated, yes. Yet, strangely aware of the loving attention from my husband and son. It seems fitting that my first meal back was compliments from Kyodai, a favorite Japanese restaurant in my hometown where I had my last dinner before surgery. When hubby picked up a phone order, the owner refused payment. He said, it was his treat. This kindness and the sweet messages from family and friends, from near and far via phone text and facebook stirred the heart. So did the yellow flowers and a get-well card from a dear neighbor.

But by midnight, I was awakened by a whimper. Sadly, my own. My darling husband tightened his grip on my right hand as we slept. Another dream. My heart was thumping. My spirit felt conflicted.

The image clearly placed me in some science laboratory. I recalled signing my name on “thank you” cards. I presumed maybe they were for the medical team—hospital nurses who especially left a good impression. I was aware that someone else was across the lab table from me also working on something when the electric lights nervously flickered. The room darkened. In a panic, I walked out of the room ushered by a middle-aged or older woman. Distressed over this unexplainable event, I turned my neck longing to look at her, but careful not to snag the bandages covering the incision on my head. I noticed her left arm holding my right was light skinned. Her facial features resembled the poise, beauty and grace of my late mother. She calmly whispered, “Come with me.” She wore a black veil made of lace ever so intricately designed, the kind one wore to church at a solemn  mass. A funeral. 

My chest tightened. I miss Mom. And here she was in my company after my potentially life-threatening medical procedure. But the surgery was done successfully. Even in my dream, I knew she would have to return to heaven. It wouldn’t be right for me to join her. I must say goodbye again, as much as that pained me. 

I heard myself respond, “Where are we going, Mom? I can’t go with you.” In that precise moment, my husband who was lying with me in bed, squeezed my hand even tighter. I woke up. Tears flowed. I survived a harrowing medical scare. I laid there transfixed and in awe of life, knowing full well there’s a thin line between earth and heaven. That transition could happen at a drop of a tear. 

A little over three months had passed since the surgery, the day of the reveal. The period of healing has had its share of hills and valleys. Yes, the mass was benign, but my neurosurgeon expects to keep a close eye and will order another MRI once a year for the next two years. He wants to be vigilant in the small chance there might be new growth. For now, the biopsy showed a benign meningioma; no chemotherapy or radiation required. 

Gradually, I have  gained clarity on what could be happening inside my skull. This one night was particularly muggy as I fell asleep. The heatwave typical in July or August which came in early June made for  restless sleep. I finally dozed off by 10:00 p.m. only to be awakened by a shooting pain in my head at its apex at 1:30 a.m. When a similar phenomenon happened at post-op, the nurse described it as visceral pain. I described it as wild pain taking an inconsiderate joy ride in the incision. From under my skull, a sensation of a tiny chisel etching nonsensical designs. Hubby being a night owl heard me groan as I pressed my hands around my head. He asked if I needed an ice pack. I said, “Yes, please.” 

A neighbor who specializes in neuro-care nursing later explained the condition. What I experienced is called vasospasm—the contraction of blood vessels. It could happen again and again during healing but only for brief periods.

This time, I wasn’t having a nightmare. And indeed, the ice pack calmed down the intense pain. Later, pain gave way to itchiness along the incision. The itch simulated a slow miniature train gently running on its tracks. A sign my incision is definitely continuing to heal. I did not panic.

These days, I’ve continued physical therapy to address weakness and muscle atrophy from inactivity; both have affected my balance. With my hubby and son’s help, I have visited our sailboat and braved the 1/4 mile walk on the docks even on windy days. The rocking sensation was not alarming at all. It was no longer from vertigo or lightheadedness from the pressure in my head. The rocking sensation was either from the south easterly wind swaying the boat or triggered by family when coming on board or exiting from it. 

Physical Therapy in June. ©Adrian Sobredo

The medical team of in-home nurses, speech and physical therapists, a neuro-nurse in my neighborhood, and a new physical therapist are my smart angels of healing. Overtime, they have collectively helped me understand the science of my post-surgery experience. Vasospasm, itchiness, throbbing pain, and pressure visit my head periodically. One or all symptoms crop up without notice, usually in the daytime or while awake, but no longer in the middle of sleep. When it happens, I imagine there’s increased circulation, blood vessels contracting, and synapse in the skull severed by incision in surgery springing back to life, or sparks from new synapses being born. 

My brilliant neurosurgeon simply puts it: “Nerves are growing.”

All I know is that the pain and itchiness from nerves growing vary from dulling to throbbing. It’s no wonder I feel like a science experiment. 

The nightmares seem to be a thing of the past for now. Healing from craniotomy is more or less on schedule. I am told it’ll take up to a year for my head to feel near normal again; for me to feel near normal. But why wait for near normal to do silly, impetuous acts? Like running through the garden sprinklers as water sprays in choreographed randomness on a hot day. Perhaps walking and twirling gingerly onto the lawn, with the sprinklers on, was more my speed. “I should do it while I can,” I told myself. And for a few moments, my world was in motion by choice and on my terms. Besides, what a gloriously crazy way to while away a warm evening in June. A re-enactment from my youth.

Cooling Off on a Hot Evening in June. ©James Sobredo

Grateful that by June, my RA symptoms were manageable. Grateful my doctors let me resume medications for my chronic RA two weeks after getting home from the hospital. By then the staples from my skull were removed. The incision was sufficiently, although not completely, healed  and risk of infection was low. But none too soon before the inflammation, joint pain and stiffness resurfaced once the anesthesia and pain drugs wore off. Such is life. And that’s just it, I am alive. 

©Essay by Lu Sobredo

ALL RIGHT RESERVED

ACKNOWEDGEMENT: 

READERS: Storytelling has been a comforting outlet during my period of healing. Thank you all for engaging. 

FAMILY: I don’t have enough words to express how much love and gratitude I feel for my hubby and son for their sacrifice to take care of me.

SURGEON: My surgery was a success. Special thanks to my neurosurgeon, Dr. Griffin R. Harsh, IV and his team for the excellent care I’ve received. 

Dr. Harsh is the Julian Youmans Endowed Chair of Neurological Surgery, Professor and Chair | Neurological Surgery at UC Davis Health Medical Center.