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Survivor Stories
Jeff Larsen
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More than two years after the fact, it’s hard for me to even imagine I almost died in January 2005.
At age 59, miraculously, I survived a rare and usually fatal form of bacterial meningitis called listeria meningitis. Trish, my wife of 40 years as of June 2007, and I still debrief about the whole ordeal frequently, more than two years after the fact. The circumstance of my illness was emotional and soul searching. We both agree we’ve taken some powerful lessons away from the experience.
To be honest I don’t even remember being transported by ambulance from the comfort of my Seattle home to the hospital Thursday morning January 13, 2005. I certainly was sick, but how sick no one seemed to know. Even my Psychiatric nurse practitioner wife--who has extensive medical experience as well--wasn’t sure what was going on. Trish figured I probably was just dehydrated from the flu-like symptoms. Whatever, she figured my hospitalization would only last a couple of days at worst.
Trish didn’t know then that the worst of the worst was just around the corner.
Initially emergency room doctors at the Ballard campus of Swedish Hospital agreed with Trish. They thought I had a severe case of the flu given the time of year and symptoms. The hospitalist on duty when I arrived, Dr. George Haddad, an internal medicine specialist, thought my symptoms might also be related to my ongoing battle with severe ulcerative colitis (UC). Clearly I was dehydrated so he ordered intravenous (IV) fluids, and, since I obviously had sepsis from an infection, he started a broad-spectrum IV antibiotic as well.
Thursday afternoon the doctors decided to hospitalize me overnight on a medical floor to monitor my condition. I continued to get sicker.
Dr. Haddad told me later he tried to strike up a conversation with me right after I was hospitalized about my work as a travel writer and photographer for a Seattle newspaper. “I like to establish a rapport with my patients,” he said. But I didn’t even acknowledge his question.
Dr. Haddad assumed from my response I just wasn’t a very sociable person. Trish explained to him at the time that my lack of reaction to his inquiry was not typical. She told him I was usually gregarious and social to a fault. I learned later personality change is one early neurological sign of bacterial meningitis.
Thursday night Dr. Haddad decided to transfer me to the hospital’s intensive care unit (ICU) as a precaution after he received several disturbing reports about wild fluctuations in my blood pressure and escalating temperature from one of the nurses who was managing my care on the hospital’s medical floor. The same nurse notified Trish at home that my condition had worsened and I was headed for the ICU. Trish, in turn, notified our 30-year-old son Ben then drove back to the hospital 25 minutes away to be at my bedside. Ben arrived early Friday morning.
Overnight my condition continued to deteriorate. The doctors still didn’t know why I was headed south so fast. As it turned out the most critical hours of my life were just ahead.
It’s important to remember, I was in a compromised state of consciousness when I arrived at the hospital Thursday morning. Beginning Friday morning I was in a coma for the next ten days. What I’m relating now is information shared with me by Trish, our son Ben, friends and many of the doctors and nurses who were involved with my care over the next month. I don’t remember any of the early stages because of the coma.
Friday morning during her rounds, Critical Care Nurse Practitioner Janice Ekemo noticed I was posturing and agitated. She said I looked completely different from when she had visited me just an hour earlier. Ekemo told me my behavior indicated a neurological problem might be brewing. “I touched your arm and you almost went into a seizure,” she said. “That’s when I absolutely knew something was seriously wrong.”
My physical and neurological changes were so troubling she paged her boss, Dr. Curtis Veal, head of Swedish Hospital’s ICUs, out of an important meeting. Ekemo told me later Dr.Veal knew her page was urgent because after more than six years working together she made a point never to page him unless a very critical situation warranted it. Veal told me he never questioned the page. He immediately left the meeting but he faced a long drive across town to get to the hospital.
By the time Dr. Veal arrived, Dr. Haddad had already finished a spinal tap – a procedure that would help doctors pinpoint what if anything was going on in my central nervous system. Dr. Haddad told me later he was shocked when he saw my cloudy spinal fluid. He expected the fluid to be clear still figuring I was sepsis from my gastrointestinal infection. As he explained later, before the spinal tap he was still “hearing horses hooves”—a medical training phrase. Now, with the cloudy spinal tap, the doctors and nurses knew they had a real problem – a medical emergency of sorts. The horses suddenly had changed to Zebras for Dr. Haddad.
The doctors, along with the ICU head nurse rushed the spinal fluid specimen to the hospital’s lab. Typically doctors are not allowed in hospital labs. Dr. Haddad said he wasn’t even sure he knew where it was. The entourage was able to convince the lab to move my specimen ahead of other lab work because of how fast my condition was deteriorating. Time now was of the essence. Ekemo told me later; Friday morning – because of how frantic it was to diagnose and start my treatment – the time was “the fastest three hours ever in my life.”
Dr. Haddad said the specimen stain was not what he expected – another Zebra. He paged infectious disease specialist, Dr. Greg Moss (who coincidentally just happened to be in the building) to see if he could confirm the type of bacteria in play. As soon as Dr. Moss saw the shape of the bacteria, he knew immediately I was suffering from a rare and often fatal form of bacterial spinal meningitis called listeria meningitis. Dr. Moss told Trish he hadn’t seen a case of listeria meningitis in more than seven years.
From what I learned later listeria monocytogenes bacterium is food borne, most commonly found in contaminated foods (that may or may not look, smell or taste contaminated). In my case the bacterium passed through the wall of my intestine into my blood stream, past the blood-brain barrier and promulgated in my central nervous system. Who knows where I contracted the bacterium. I travel a lot on my job and the incubation period is 11-70 days.
As it turned out, my immune system was so depressed as a result of powerful immunosuppressant drugs I was taking to treat my ulcerative colitis --a chronic gastrointestinal inflammation that had worsened--the listeria bacteria was able to pass easily into my bloodstream through the ulcers in my colon.
Again, because my immune system was so severely depressed, the bacterium was able to make the difficult transition past the blood brain barrier and settle into my normally sterile central nervous system- usually the final and most fatal step.
According to one medical researcher about five to ten million Americans live with listeria bacteria in their intestines. HIV patients, whose immune systems are damaged, are close to 300 times more likely to contract listeria meningitis than the average American. The listeria monocytogenes bacterium often will remain dormant in a person’s intestine. The presence of listeria monocytogenes, however, can also be manifested by flu or food poisoning-like symptoms (listeriosis).
The bacterium is often found in cold cut deli-style meats, hot dogs, and soft cheeses (many from Mexico) and even thrives in cold environments like deli cases. Pregnant women are often susceptible to the disease as well and advised not to eat deli-style meats or soft cheeses during pregnancy.
After Drs. Moss and Haddad identified the listeria bacteria, Dr. Moss ordered a barrage of antibiotics to try to counter the infection. He guessed it took only about 15 minutes after the bacteria was identified to get the antibiotics flowing--light-speed in most hospitals. But the question was, would the antibiotics be effective considering the large doses of immunosuppressant drugs I already had on board? The effects of one immunosuppressant I had just taken were supposed to last eight weeks. Nobody knew.
Most of the doctors involved in my case agreed the hospital’s small size enabled them to expedite the spinal tap analysis and start the antibiotics in minutes instead of hours. They also started me on oxygen soon after the neurological symptoms started which was critical in reducing the risk of any permanent brain damage.
From the very beginning of my treatment for listeria meningitis the prognosis was not good. Historically it has lead to lousy diagnosis in immuno compromised adults. Dr. Haddad and Dr. Moss counseled Trish just how fatal this form of bacterial meningitis usually was in a case like mine. Even if I survived I most likely would be left with some serious physical or mental deficits, if not from the infection itself from some of the high-powered antibiotics they were giving me. The report was grim at best.
On a professional level Trish understood medically what the doctors were telling her. Trish also understood why, liability-wise, they were obligated to give her the worst-case scenario. She decided to sugarcoat the interpretation of the dreadful medical diagnosis to Ben but still let him know I was in very critical condition.
My condition continued to worsen over the weekend. As the news and prognosis worsened neither Trish nor Ben were able to get much sleep – a nap here and there maybe. Both were constantly at my bedside. Trish slept most nights in my room on a hospital-supplied cot.
Unfortunately part of my worsening condition included seizures – unique to listeria meningitis. Monday, because the intensity and number of seizures were increasing, the doctors decided to sedate me with general anesthetic, a frequently used anesthetic/sedative medication common in ICU settings. The drug works similar to a light switch – it’s either off or on with a very short half life.
Since I was on such a potent sedative to help get me past the seizures, the doctors were forced to put me on an artificial breather to support my respirations. I was intubated on Monday. Apparently I also was in acute respiratory failure from the coma and most of my systems were beginning to shut down. Later, a nasogastric tube (ng tube) also was inserted since I was unable to take any nourishment by mouth. The ICU also had me tethered to a telemetry system so the nurses and doctors could closely monitor my vital signs.
Trish said my prognosis was worse every day. Her friends and Ben were very supportive as she contemplated her life after my death. Friends brought small ceramic and crocheted angels to hang over the head of my bed in ICU to try to help.
After I was sedated, Trish told Ben how peaceful she thought I looked finally free from the rigors of the dreadful seizures. Ben agreed, but noted, sort of in a joking manner, it took a strong sedative, an artificial breather and feeding tube to stabilize me to the point I was at.
Wednesday doctors shut off the general anesthetic to see if I would respond to any external stimulation. The response to external stimuli should have been immediate. No luck. After an hour and a half and I failed to respond, doctors were worried I would never respond. They turned the general anesthetic back on. Doctors then gave Trish notice I may end up with severe brain damage if I survive -- the second such notice in three days. The angels weren’t working yet.
That Friday they turned off the general anesthetic again to evaluate my level of consciousness. This time I reacted to external stimulus like I was supposed to. My wife (with her dear friend Mary Jean at her side), our son, nurses and doctors were delighted. I wasn’t out of the woods but the signs looked good for, at best, a gradual improvement. Most of the tubes and telemetry were removed on Sunday as I continued to improve. The angels had finally kicked things into high gear.
From that point on, nurses and doctors used terms like “phenomenal” and “a miracle” to describe my recovery. Nurses (including Trish) and doctors constantly tested my mental acuity by asking me questions about who I was and where I was. To me it felt like I was swimming upstream in a haze with no idea who I was, where I was or what had happened to me. My mind played mean tricks on me. It took me terrible places I wasn’t familiar with. I started to talk but my sentences didn’t make much sense in the beginning. Everyone was so polite not to point that out to me until later.
As I improved, I eventually was transferred to a medical floor for a day then to another branch of Swedish Hospital for rehabilitation. I had to learn how to walk, talk, eat, shave, shower – all of the things I knew so well – all over again. The physical therapists pushed me unmercifully until they were satisfied I had sufficiently recovered my balance, strength and at-home skills to release me – only a week after I was released from ICU.
Because of constant headaches, no appetite and escalating temperature, infectious disease specialist Dr. Moss, readmitted me to the hospital three days after I was released from rehab. He was concerned about a relapse and tried to find the source of the fever and headaches with no luck. My spinal tap was clear, thank God. He restarted the IV antibiotics along with broad-based antibiotic pills for a week. He never did find the source of the problem, but I recovered and was released again.
I returned to work several months later and subsequently had my colon removed when the severe UC returned.
Trish and I, during our debriefing sessions, have discussed at length what lessons we have taken away from all this. For one, Dr. Haddad told us my outcome was an example of “medical technology working at its very best – as good as it gets.” The doctors and nurses made all of the right calls in the right order fast enough to save my life. That’s the “trust the medical professionals” part.
Secondly, prayer, positive thoughts, supportive family and friends might even be as important as the “trust the medical professionals” part. It truly was a synergistic effort.
We’ve both taken away from this a new appreciation of what’s important and what isn’t and renewed our effort to try to reduce the amount of stress in our lives. I retired from my photographer/travel writer position at the newspaper May 1, 2006.
Personally, and medically more specifically, I’ve learned that immunosuppressant medications (Remicade specifically), in huge doses to treat refractory ulcerative colitis like mine, can have disastrous consequences. Remicade recently was approved for use in moderate to severe cases of ulcerative colitis – 50,000 strong nationwide. I had two infusions on board when the meningitis struck. The drug is extraordinarily expensive and can help suppress an immune system to the point of no return. The drug apparently has had great success suppressing rheumatoid arthritis, another autoimmune disease like ulcerative colitis.
I was delighted to read recently bacterial meningitis vaccinations have been approved for young people – a little pricey, but approved. Still, even for young people, there is no vaccination for listeria meningitis – from my point of view, the meanest bacteria on the block. Maybe some day?
Jeff Larsen
Seattle Washington
jcl@photonorthwest.com
June 12, 2007
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