Mari’s Exposure to Campylobacter
Expert reports on foodborne hazards say those most at risk for foodborne illnesses like Campylobacter jejuni infection are the very young and the very old, or persons with compromised immune systems. But beyond the generalities and statistics are real people. In Mari Tardiff’s case, this sudden, life-threatening and life-altering illness struck someone who was in the prime of her life, robustly fit, more healthy and more health-conscious than most.
Mari, a public health nurse, routinely worked 10-hour days, exercised daily and was an accomplished athlete. Mother of 2 sons, she adeptly balanced a busy, fulfilling life with her husband, Peter, a veterinarian. With an active social life and many friends, the Tardiffs had created a comfortable, inviting home in California.
Mari purchased raw milk from Alexandre EcoDairy Farms on Sunday, June 1, 2008, and first tried it on Monday that week. She drank it again on Wednesday and Thursday.
Onset of Symptoms: Campylobacter Infection and Guillain-Barre Syndrome
On the weekend after Mari drank the raw milk, she developed flu-like symptoms, including diarrhea and vomiting. On Thursday, June 12, the gastrointestinal symptoms continued. That day, Mari also began to experience tingling in her hands and feet. Mari went to an emergency room, and there lab work was done and abdominal X-rays were taken. But doctors could not determine what was wrong.
On Friday, June 13, Mari’s vision became blurred. Peter called a neurologist to consult on Mari’s condition, and the doctor phoned in an order for an MRI. The MRI was normal but the doctor and radiologist mentioned a frightening possibility – Guillain-Barré syndrome, or GBS, a potentially fatal inflammatory disorder.
Hours later, back at home, Mari’s legs were on fire, searing with pain that, ironically, only hot water helped to soothe. Her legs hurt so much that she soon retreated to bed, wrapping her legs in warm towels and a heating blanket. During that night, Mari awoke and realized she could not move. Peter bear-hugged her to lift her to the toilet and then carried her back to bed. In the early hours of the morning, he called for help, which led to an ambulance ride to a small hospital, and then a medivac flight to the Intensive Care Unit at the larger, better-equipped medical center.
Hospitalization for Guillain-Barré Syndrome
The doctor who met the Tardiffs at the hospital diagnosed Mari with Guillain-Barré syndrome. He did a spinal tap and said Mari was the first patient to thank him after such a painful procedure. The doctor also expressed hope that the worst might be over. Sadly, he could not have been more wrong.
Throughout Father’s Day, Sunday, June 15, Mari’s breathing became increasingly labored. She could not talk and could barely swallow. She remembers weakly nodding “yes” when Peter said the doctors thought she should be intubated and asked if she agreed. Mari was then connected to a breathing machine and had to be heavily sedated. Two weeks later, she had to breathe through a tracheotomy tube in her throat, and a feeding tube was also inserted.
To help her communicate, friends and family used an alphabet board to slowly spell out words, with Mari blinking to signal each correct letter. The effort often wore her out. To summon nurses, Mari made a clicking sound with her tongue into a baby monitor.
Nights were often nightmarish. Some of the drug treatments intended as sedatives had the opposite effect, making her agitated and paranoid. She suffered from hallucinations until her medications were finally changed.
A few of the hospital staff members who attended her thought of Mari as a quadriplegic. True, she was paralyzed from head to toe but she still had sensation in her body and experienced severe abdominal pain. Her feet often throbbed with pain. Being moved, poked or prodded was agonizing, and hospital staff sometimes seemed oblivious to this as they moved her about. Even something as simple as getting into and sitting in a special, mechanical lift chair was torturous and exhausting.
Subjected to constant pain, and the added indignities of enemas and other procedures, Mari felt that she was trapped in her own body. Not being able to speak up meant she sometimes had to contend with condescending or thoughtless treatment. One nurse took Mari’s temperature on her nose and then lamely joked, “She’s dead.” Emotions began to overwhelm Mari and depression predictably settled in.
“The thought of my death was becoming a welcomed relief,” she later recalled. “I clearly remember telling my husband that I could not go on. I remember him crying and begging me to promise that I would not give up but rather do my best to hang on. Once I promised him that I would try, my emotions were up and down and the feeling of being a prisoner in my own body proved to be overwhelming. Ironically, I became aware and cognizant of each hour dragging by, while losing track of time in the real world.”
Two weeks into their ordeal Peter began keeping a journal of Mari’s hospitalization. It notes a few bright spots:
- The first time Mari asked to watch TV;
The day her sons brought Mari a star machine to light up her room at nightA moment when Peter thought he felt Mari move some muscles in her left shoulderThe morning Mari was able to shift her left hip
One day, coaxing a smile from Mari put Peter into a reverie. “I do not know a person as happy as Mari,” he wrote. “She has such an infectious smile.”
As Mari tried hard to do whatever her weakened body would allow, Peter told her she was amazing. He observed,
Her strength in both mental and physical is beyond words. Most people will never have to endure anything even close to this. In all this pain and discomfort, she has been able to make people around her laugh. I hope when she reads this later, she does not edit ‘she is a beautiful person.’
Such was his devotion to his wife.
But the journal also chronicles the low points of Mari’s illness—setbacks, tedium, depression, moments of horror. On July 7, for example, a nurse inadvertently pulled out Mari’s tracheotomy tube as she tried to move her. Nurses shouted, frantically trying to replace the tube, while Mari lay immobile, unable to breathe. Blood splattered everywhere and had to be suctioned from the tube when it was finally reinserted.
Many nights Peter left Mari’s bedside long after midnight, making him terribly weary. He wrote of how “lack of sleep, not knowing what to expect, unable to attend to all of Mari’s needs, dealing with nurses, doctors, the hospital and trying to run a business became overwhelming …” The first time Peter had to return to Crescent City to work two full days, he worried constantly about his wife and telephoned her repeatedly. All Mari could do to reply to his voice was softly smack her lips, a sound so plaintive it broke his heart.
The longer patients are on mechanical ventilators, the more difficult it is for them to breathe again without them. After Mari had been on a ventilator for five weeks, her doctors began trying to wean her off in the complicated process that involves monitoring breath volumes and rates, pressure support and oxygen concentration. From time to time, Mari was provided for continuous positive airway pressure (CDAP) as part of the transition from mechanized breathing. Mari made progress, but she still could not breathe on her own.
Before she got sick, Mari had been transitioning from her job as a public health nurse to a higher-paying post with the state Department of Corrections. Now, not only was her career on hold, it appeared to be over. In late July, the Tardiffs were notified by the Department of Corrections that Mari must report to work by September 15. Peter wrote in his journal, “Obviously, we know that is not going to happen.”
On July 29, Mari asked Peter what day it was. When he told her, she observed that she had lost the entire summer. In his journal, Peter reflected on how close she had come to losing her life.
Although both Mari and Peter have medical backgrounds, they were largely kept in the dark about Mari’s condition, perhaps because there were no clear answers about her future. When Peter began hearing rumblings that Mari would have to leave the ICU, no one came to him directly. Then on August 1, “out of the clear blue” as Peter recalls, the medical team and a discharge planner laid out their grim prognosis: Mari was not improving, she might never again breathe independently, and the Tardiffs must consider putting her in a long-term care facility.
The discharge planner did not refer to Mari by name, but called her “the quadriplegic.” An institution in Denver was recommended, with the doctors and staff acknowledging this might mean Peter would need to make changes, including moving his family and selling his business. Later, Peter wrote disdainfully in his journal, “No shit…where have they been the last two months?”
In reality, Peter was in shock. But he met with a representative from the Denver institution. Unimpressed by her presentation, he found on his own a more suitable rehab facility in Redding, a place with a 100 percent rate in weaning its patients from ventilators. Still, he continued to have reservations about moving Mari.
Peter’s journal entry on August 9, a Saturday, marked the end of Mari’s eighth week on a ventilator. He wrote that a group physical therapy session had turned disastrous when Mari slid down the table and could not move at all. She was upset, and said that she was a failure.
At the start of her ninth week on the ventilator, Mari told Peter she wanted her life back. Later, she told the doctor she could start healing her body if she could get off the ventilator, start eating and having normal bowel movements. She decided those were the goals that she needed to set.
As the days crawled by, they were punctuated by distressing setbacks: Repositioning pillows set off a horrible gag reflex; Mari panicking, unable to breathe, as her body was moved; an unsuccessful attempt to change her tracheal tube, and finally a doctor simply yanking it out.
But there were also small triumphs: Mari sitting up in the chair for forty minutes. Mari surprising everyone by speaking her first words in eight and one-half weeks after her doctor loosened the cuff holding the tracheal tube.
Mari was moved to Redding by medivac on August 20. For the first time in nearly eleven weeks, she was outside the hospital. Nevertheless, the change of scene was challenging—new people, a different ventilator, unfamiliar routines. During her first days in this long-term acute care facility, a battery of tests revealed she had been transferred with an undiagnosed blood infection. Because of this, Mari’s roommate had to be moved and she was left alone in isolation.
Soon after, for the first time since the onset of paralysis, Mari saw her face in a mirror. She did not recognize the person staring back at her.
As important as it was for her to breathe on her own, Mari had moments of anxiety and doubt. Mucous plugs sometimes blocked her airway, causing harrowing feelings of suffocation. She tried to cling to the thought that breathing once had been natural, and would be again. In the end, it was controlling the blood infection that helped her make huge strides toward getting off the ventilator.
In less than four weeks at Redding, she was completely weaned and breathing room air, improved enough to earnestly begin rehabilitation. Other incremental successes soon followed: sitting up again for the first time, even though she crumpled in five seconds; taking her first shower since becoming ill, even though it was painful because being bedbound caused painful muscle cramps. She passed a swallow test and was able to taste a little food once more.
Still paralyzed, with only moderate torso control, Mari was transferred back to the Rogue Valley Medical Center, this time for inpatient rehabilitation. She still had a Foley catheter in her bladder and a feeding tube in her stomach. But Mari was delighted with a lift suspended from the ceiling, allowing her easier transfers from bed. She eagerly started speech, occupational and physical therapies, napping between each demanding session. Then, during one therapy session, seeing her image in a full-length mirror delivered a crushing blow to her psyche. She saw a broken woman. It took every ounce of strength to hold back her tears.
Initially, Mari had assumed therapy would restore her independence, help her resume her former, active life. But now she was devastated to think she might have been overly naïve. The end goal might only be a motorized wheelchair.
An electric chair with a chin device for maneuvering became a symbol of defeat and Mari feared that to use it might mean resigning herself to life as a quadriplegic. When this began to sink in, she found herself on the brink of an emotional meltdown. She could not cry, because even something as normal as sobbing and shedding tears might compromise her fragile respiratory system.
Mari struggled back from this all-time emotional low. She had been away from home for five months and had lost all sense of herself. Mari realized she had to come to terms with her ravaged body, and knew that if she was to win this battle, she needed to come home and re-engage in her life.
On November 1, 2008, Mari returned home to Crescent City. She still needed a urinary catheter. To end her reliance on that, she had to be positioned in a lift and hoisted onto a portable toilet every two hours, day and night. With no night-time caregiver, Peter sometimes wondered if they would yet have to resort to placing Mari in a care facility.
When Mari was in the ICU in Medford, it had been a two and one-half hour drive each way for Peter and then a five-hour trip each way when she was transferred to Redding. For months, in order to be with Mari, Peter had to hire relief veterinarians to cover for him at his clinic. After Mari became ill, the stress on Peter was so great that for the first time in his life he had to take blood-pressure medication. As difficult as the situation was for Peter, keeping Mari at home was better for both of them.
Today, Mari lives in her family room, which now is equipped with a hospital bed, portable toilet, a Liko lift and a stand-up frame, all purchased by the Tardiffs. Using their own resources, they also renovated a downstairs half-bath and laundry room into a handicapped-accessible bathroom and shower. The Tardiffs pay two nurses, one CNA and one LPN to care for Mari from 7:30 A.M. until 7:00 P.M. five days a week while Peter is at work. Home health physical and occupational therapists also come to the house five days a week.
Mari works very hard at therapy but it is a slow, painful process. Peter has found it so upsetting that he no longer can watch. Every improvement is celebrated, but he knows how much discomfort and frustration goes into each minute, regained movement.
Status 1 Year Later
Mari is essentially a quadriparetic, and requires constant attention from either an attendant or a family member. Mari’s fnctional status remains significantly impaired:
- Bending: Unable to bend due to poor balance and decreased core strength.
Twist: Able to turn herself to her side with minimal assistance. Kneel: Unable to do. Keyboarding: Unable to do.Stoop/Squat: Unable to do.Climb: Unable to do.Balance: Sitting balance is improving as core strength improves with physical therapy. She is able to sit on the mat table in physical therapy with the support of her hands. Physical Stamina: Quite diminished. She fatigues easily although her endurance has been increasing. Driving: Unable to do. Dressing: Dependent.Hygiene: Dependent. Has just started to be able to lean forward. She showers in a sit-down shower commode chair.Cooking: Unable to do. Her aides, mother, friends, and/or family do all of the cooking.Housework/Home Maintenance: Housekeeper comes weekly and was doing so prior to the onset of the GBS. Yard Work: They have hired someone to do the yard.Shopping: Peter does all of the shopping.
Mari still suffers from intermittent nerve pain in her legs, usually once or twice a day.
Mari has no easy days. Each night, Peter awakens and turns Mari roughly every two hours. At 2:30 a.m., he wakes Mari, and assists her to the commode. Between 5:30 and 6:00 a.m., Mari wakens for good to begin her day. Again, Peter assists Mari to the commode using a sling and lift. From there, Mari is moved to reclining massage chair. Mari’s aide arrives around 7:00 a.m., at which time Peter can leave for work. The aide showers, dresses, and feeds Mari. The aide prepares all meals, and helps with some of the housework. Around 3:00 p.m., Mari’s 84-year-old mother comes to stay with her until Peter arrives home at dinner time. Peter assists Mari with all evening hygiene and transferring Mari into bed.
Mari’s current existence bears no resemblance to the life that she lived prior to her illness. Before her GBS, she enjoyed golfing, kayaking, biking, and skiing. She worked out 3-5 times per week at the local gym. In May 2009, Mari’s first “outing” since her illness was a single trip to Home Depot. Peter does take her to the beach, but she cannot access the sand on her wheelchair.
Mari may never walk again. She lost her job, she lost her dreams and plans that she held dear. The illness has been a long, arduous journey for Mari, her family and friends, and while she has made progress, there remains a long way to go.
Peter observes that unless you have lived through a similar ordeal, it may be impossible to understand how terrible it is to see life as you know it swept away in a flash. He says words cannot express the pain, confusion and doubt over whether enough was done to protect Mari and others and, most of all, whether she will ever completely recover.
Mari continues her fight to return to her previous state of health. She faces a long and uncertain path. On January 26, 2009, her treating physiatrist provided an overview of her ongoing struggle for recovery. He reported the following:
Ms. Tardiff’s current status with respect to her Guillain Barre is that she has stable quadriplegia secondary to the Guillain Barre. She is experiencing healing and return of strength at a very slow pace. She still does not have the ability to walk or stand and very limited use of the upper limbs.With regard to [her] current treatment program, she is continuing to work with outpatient physical and occupational therapy. Presently she is living in Northern California on the coast and receiving some therapies in her community there. As she regains more function, I would like her to come to the Rogue Valley for more intensive physical and occupational therapies.
My prognosis regarding the Guillain Barre is that she will likely experience continued slow progression in terms of regaining her strength and functionality. However, I do believe that she will have permanent disability as a result of her Guillain Barre Syndrome. She suffered a very profound neurologic injury requiring her to be ventilator dependent for about three months. At this time she is over seven months out after presentation of initial symptoms and remains quadriplegic…Although there is the possibility that she will fully regain all function, as time progresses the chance of this becomes less and less.
With the financial recovery Mari made against the dairy, she has made a remarkable recovery. With years of rehabilitation, she is now able to walk with the assistance of high-tech leg braces and canes. She hopes to one day walk without aides.