BK

Texas

My Story

 

                      Meningitis is no Sunday picnic!

 

Author: BK from Texas

 

Summary. I am one of a lucky few. I am a survivor of meningococcal meningitis. I survived after an onset of illness that occurred while I was traveling in southern India. I spent three days in a frightening delirium and never once received antibiotics. In addition to some of the usual after-effects of meningitis (such as inflammation of my joints, numbness in my arms and hands, and tingling in my wrists and ankles), I also experienced two additional severe complications of meningitis, namely, pericarditis and a gross enlargement of my ascending aorta. Some 18 years after meningitis, I had to have open-heart surgery to resection my aorta. Two years after that surgery, I experienced a dissection in the remaining native tissue in my ascending aorta. Somehow, I survived that too, and without surgery. As a “walking miracle” (in the words of Frankie Milley), I am an advocate for immunization against all vaccine-preventable diseases. I am an active member of several local immunization coalitions as well as a regional HIV prevention community planning group.

Trip to India. In 1981, while exploring the historic temples of southern India, I contracted Neisseria Meningitidis, the bacterial cause of meningitis. Since I was in excellent health, strong, fit and robust, the incubation period for me lasted about 10 days. During that time I noticed that I was starting to experience low-grade fevers that seemed to become constant, night sweats, loss of appetite, dizziness, and fatigue. Luckily, I was back in Madras, India, when a raging fever overwhelmed me.

I was at a dinner party hosted by an actor in Tamil-language films when I started to feel very feverish. I quickly took my leave and returned to Hotel Sharmani. Alone in my room, I became more and more disoriented and dizzier by the minute. Before I could even change into more comfortable clothing, I became delirious. This lasted approximately 48 hours over a period of three days. At some point during those first hours of delirium, I managed to pull off all my clothes in an attempt to stay cool, but the fever raged on and on.

One of the persistent sensations I experienced during delirium was that of the room spinning, and spinning, and spinning, and all I could do was close my eyes and moan. It seemed like the dizziness and the hallucinations during delirium would never stop.

Remarkably, there was an “Attendant’s Bell” conveniently located just inches from my bed, but during delirium I never once attempted to reach for it to call for help. Also, several attempts apparently were made by hotel staff who came to check on me, but I did not respond to their knocks at the door. The door was securely bolted from the inside, and I could not get up to open it. I can recall feelings of extreme fear during the delirium. Every time I heard a sound out in the hallway, I would cringe in terror.

By the morning of the third day, I sensed that my fever might be subsiding. About mid-morning, I became somewhat lucid again. This was just barely enough for me to realize that I had to get to the medicine cabinet in the bathroom and start taking aspirin to try to break the fever. I drifted into and out of delirium for the next several hours, but finally I forced myself out of bed. I threw myself to my left side and rolled out of bed, dropping to the floor. The fall from the bed knocked me out of breath, but I recovered. I then started to crawl on my belly, inch by inch, toward the bathroom. I could not stand up because of the dizziness and the terrible aching in my bones, joints, and muscles. Every small movement was incredibly painful.

Just as I reached the bathroom and started to pull myself up toward the medicine cabinet where I kept the aspirin, I slipped into delirium again and slumped to the floor. After some time, the delirium subsided again and I struggled to reach for the aspirin. This time I managed to grasp the bottle, twist the cap, and take six aspirins. I washed these down with tap water directly from the faucet. I understand now that taking aspirin for meningitis is never recommended by doctors, but it was the only thing I had.

I slowly crawled back to bed and within 20 minutes, the fever broke and I did not slip into delirium again. After about an hour, I attempted to go back to the bathroom for more aspirin. I was finally able to stand, but I was very wobbly. I slowly shuffled to the bathroom. After taking four more aspirins, I just sat there. After awhile, I moved over to the shower for a bath. The running water was refreshing and cooled me down even more. It felt like I was becoming more and more lucid, but I felt exhausted and hungry.

When I returned to the bedroom, it finally dawned on me that I could push the “call button” for help, which I did. An attendant soon arrived to check on me. I told him I had been sick, and I asked him to change the bedding. The sheets, pillows, and the mattress were all soaked with sweat. The attendant brought a fresh mattress, sheets, and pillows and made the bed.

While the attendant straightened up the room, I dressed and went downstairs to the restaurant, but nothing appealed to me except the yogurt. I was able to drink six small cups of a watery yogurt. After sitting for awhile to see how the yogurt might settle, I was coaxed by the waiters into trying the badjis (fried vegetable-filled dumplings) with a curry sauce and a masala dosai (a lentil crepe filled with potatoes, onion, garlic, mustard seed, and chilis). I nibbled on these for almost an hour. I then asked for some payasasam (a gooey sweet rice flavored with cashews, sugar, and cardamom). I nibbled on that treat for awhile, then returned to my room.

Once in my room again, I realized that it might be advisable to see a doctor. After a brief rest, I asked the clerk at the front desk for directions, and then took a taxi to a nearby clinic. A doctor examined me, but did not test my sputum or do a throat culture. He recommended that I “return to the hotel, take two aspirins, and go to bed early.” – I chuckled when I heard that, but that is exactly what I did.

Return to California. Three days later, I started my trip back to California, with stopovers in Singapore (3 days) and Honolulu (4 days). I spent each of these stopovers in bed resting. Upon arriving back at my university in California, I went to the campus health clinic to report my recent illness. The doctor who examined me suggested that the illness most likely had been meningitis. The presence of Neisseria Meningitidis bacteria was later confirmed by throat culture. Because of the extreme fatigue I was complaining of, the doctor ordered a chest x-ray and discovered that I had pericarditis and a profound swelling of my ascending aorta. I do not recall what medications, if any, he prescribed. I believe he may have only recommended bed rest since apparently I was recovering without antibiotics. The doctor checked me periodically for the next six months and during that time the pericarditis resolved itself and my aorta supposedly went back to normal size.

It took about six months before I felt strong enough to run track again or to go swimming. During that time, I struggled to keep up with my studies as a full-time graduate student and to maintain a high-grade point average. After completing doctoral studies in public health, I remained at the university as a researcher and instructor.

Dealing with after-effects for 18 years. Between 1981 and 1999, I experienced recurrent bizarre symptoms that landed me repeatedly at the campus health clinic. I would complain of “not feeling well” as well as of memory loss, problems with focusing / paying attention, depression, and a strange tingling in my hands, arms, and lower legs. I was also experiencing stiffness in my neck, episodic paralysis in my arms, and occasionally some sort of paralysis from the neck down. Over time, the doctors and staff at the clinic began to doubt my reports of symptoms and probably viewed me as a hypochondriac. I switched doctors several times in a fruitless attempt to find a doctor who would believe my reports of symptoms and who might help me.

In March 1999, I went to England to visit Dr. McCoy, a friend of mine who was completing her training at Queen Mary Hospital, in Sidkup, Kent. One morning while there, I awoke profoundly exhausted. At first I thought it was jet lag, but after being in England for eight days, that did not seem possible. I had planned a day-trip to Devon by train, but I almost could not get out of bed. I remained indoors all day, had a light lunch, then slept all afternoon. In the evening, Dr. McCoy returned home and became alarmed by the way I looked and by my symptoms. She examined me, then asked three other doctors who had dropped by for tea to listen to my heart. They then left the room and conferred. Dr. McCoy came back into the room and informed me that they all had heard a very definite aortic regurgitation (i.e., something was wrong with my aortic valve). She then asked me for a family medical history and for a personal medical history. I reported the occurrence of “sudden death” in my family and that both my maternal grandmother and a maternal aunt had experienced problems with the aorta. She then told me to go to a cardiologist as soon as I arrived back in California. The next day I left for USA.

I arrived back in California on a Tuesday evening and then went to work at the university on Wednesday, Thursday, and Friday. I was feeling tired but okay. On Saturday morning, I experienced a near-fatal aortic regurgitation. I then recalled Dr.McCoy’s advice to me to go see a cardiologist. I was able to walk to the campus health clinic, just three blocks from my home where I was examined by a visiting physician from Stanford University. She initially found nothing wrong with me, but then puzzled about my symptoms for awhile and ordered a series of radiologic images. The images revealed an enlargement of my ascending aorta. That triggered my recall of my experience with meningitis 18 years before. I mentioned that, following meningitis or coincident with meningitis, I was diagnosed with pericarditis and aortic enlargement in 1981. The doctor searched my medical record and found the report, but the x-ray images of my chest from 1981 were missing. I mentioned my family history of “sudden death” and aortic problems. She then arranged for me to see a cardiologist.

Aorta problems. I was examined three days later at a local hospital by a cardiologist. This particular cardiologist was not at all impressed with my symptoms and recommended I start taking 25 mg of atenolol per day for my high blood pressure. When I asked him what he planned to do about my enlarged aorta, he said he would treat me for my high blood pressure. I repeated to him my family history of “sudden death” and aorta problems and of complications of meningitis I had experienced in 1981. Still he was not impressed. He saw no need for further testing or evaluation.

During a 20-minute visit to the medical library at the hospital prior to the examination, I checked the manuals for diseases of the aorta and found information on Marfan syndrome. I suggested to the cardiologist that I might have this syndrome or some type of Marfan-like condition brought on by meningitis. I asked to be referred to a specialist for evaluation for Marfan syndrome, but he scoffed at this. He insisted that all I needed was to get my blood pressure under control. He then taunted me as being a “Type A-A-A-A-A personality” and walked out of the room. All I could think was “That SOB is going to let me die! … That SOB is going to let me die!

Second opinion. Instead of following “doctor’s orders,” I made arrangements to go to the Texas Medical Center for a second opinion. In May 1999, I traveled to Houston to meet Dr.Hazim Safi, an authority on diseases of the aorta. Dr.Safi had saved my aunt’s life in 1989 by performing aorta replacement surgery (i.e., the “elephant trunk” procedure). My aunt lived another 15 years, thanks to Dr.Safi’s pioneering efforts.

Dr.Safi examined me, took a family history, and ordered a CT scan. The results were frightening. He found that I had a complex aneurysm of the ascending aorta that was ripping my aortic valve apart. He recommended surgery and noted that the aorta would probably rupture within a matter of weeks without surgery. He noted that I probably had an inherited genetic defect causing a connective tissue disorder that had manifested itself as aortic aneurysm. The complications of meningitis 18 years earlier had worsened my underlying condition. This diagnosis was, of course, at odds with the California cardiologist’s diagnosis of “just high blood pressure.”

Surgery. I returned to California in early June. The following day I was called in for surgical evaluation. I had open-heart surgery a week later … at age 52. The surgeon was Dr.J.Nilus Young. During surgery, Dr.Young resectioned my ascending aorta and implanted a St.Jude #27 dacron conduit with a built-in mechanical aortic valve.

Four days after surgery, I was discharged from the hospital. Apparently the coumadin dose prescribed by a cardiologist was not therapeutic enough for me. Within days, I developed blood clots. Three of them went into my brain, and I apparently had a stroke. I was then totally or partially disabled for the next nine months. During those nine months, I slipped into a severe depression, which is a frequent development following open-heart surgery or stroke, and I had just experienced both!

Problems with medications. In early 2000, I relocated to Texas to be with my family because I thought I was going to die. Suspecting that the various heart and blood pressure medications I was taking (18 pills daily!) were contributing to or were the direct cause of my depression, I quit taking medications, including coumadin. I directed my family verbally and in writing NOT to take me to ER or to any doctor, no matter what happened. I had decided that I did not want to live as a doped-up zombie. To my amazement, within two weeks, I started to feel better, and six weeks after that, I felt well enough to go back to work. Initially, I worked at a local office of Lockheed Martin Corporation. In early 2001 I took a position at the Houston health department as a grants administrator. Ten months after that, I was recruited by a local community college to be its grants officer.

After I started to feel better, I consulted a local doctor who cautiously resumed some of the medications I had quit taking, especially coumadin. He pointed out the risk of developing more blood clots if I did not resume taking coumadin. The doctor carefully determined which of the blood pressure medications I could tolerate or switched me to other medications that would have fewer side effects.

Feeling better, but then dissection of the aorta. A year after starting work at the college, I was finally feeling good again. I was exercising regularly, walking daily, and doing my own yard work in the humid Texas heat. I felt like I was well. But, in mid-August 2002, I experienced a dissection of the aorta (like John Ritter). I was hospitalized in the cardiac intensive care unit at Hermann Hospital in the Texas Medical Center awaiting aorta replacement surgery (i.e., an “elephant trunk” procedure). However, following withdrawal from coumadin for 72 hours, the dissection closed spontaneously just hours before surgery was to take place, and surgery was cancelled.

Healthy again. I am now healthy again, but still must contend with a number of the after-effects of meningitis. I know first hand how awful this disease can be, and that it can result in death. Disease prevention has become a major focus of mine. I am an advocate for immunization against all vaccine-preventable diseases, including meningitis. I assist as a volunteer in several disease prevention programs, and whenever I hear of an outbreak of meningitis anywhere in southeast Texas, I drop everything to go work the vaccination campaign. It is my hope that everyone will consider vaccination against meningitis, especially teens and young adults.

Contact information. If you have any questions about my experiences with meningitis or with aortic aneurysm, I would be happy to try to respond to your inquiry. Please contact me by sending an email to the coordinator of this website at fmilley@aol.com. Thanks!

 

 


 

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