Once Bitten: Our Triumph Over West NIle Virus Part One

It all began with a single mosquito bite. A single bite that forever changed our lives. In the Fall of 2002, my husband, Mike began feeling ill, nothing specific really, just draggy. He was an independent contractor and routinely worked hard doing roofs, building homes and remodeling. In addition to his outside work, he had been remodeling our home.and had recently tore out our staircase to replace it. Because of this we just assumed he was suffering from fatigue and he decided to slow down..once he was finished with his current job. Well, within a week, he developed a rash across his chest and the worst backache he had ever experienced, nothing seemed to relieve it. I took him to our local hospital's emergency room. The doctor on call took some back x-rays, told him he had some discs literally gone, prescribed him pain medication and sent us home. The next night we were back, Mike's left leg was weak, it would barely support him and he basically had to drag it around. Before we went to the emergency room we had borrowed a walker to help him support himself. More x-rays...and then, nothing. Once again we were sent home. By the time we arrived at home, the walker was no help, he literally had to crawl up our front steps to get inside the house. It was actually more like a slither...he had to use his arms and upper body to pull himself up the stairs. Whatever this was, we realized it was getting progressively worse at an alarming rate and we weren't getting any answers from the medical community! It was frightening.

The next morning was September 14, 2002, a Saturday. When Mike awoke and attempted to stand up, he collapsed. Both legs were now useless. I quickly called our family doctor who told me to take him to Methodist Medical Center in nearby Peoria where they could perform an MRI. We recruited a neighbor's boyfriend to pick Mike up and put him in the passenger seat of my car and made the trip. An MRI was done as well as a spinal tap and Mike was admitted to the hospital with an initial diagnosis of Guillain-Barre. I quickly wrote down the diagnosis and upon my return home that night proceeded to read everything I could find on the internet...sounded pretty frightening, especially for Mike. Guillian-Barre Syndrome is basically ascending paralysis causing weakness in the legs that spreads to the upper limbs and the face along with complete loss of deep tendon reflexes. It is treated with plasmapheresis, the removal, treatment, and return of plasma from the circulation, intravenous immunoglobulins and supportive care. Most patients will regain full functional capacity, however, death may occur from severe pulmonary complications. As the paralysis ascends up the body, usually over periods of hours to days, the arms and facial muscles also become affected, causing problems with swallowing, and respiratory difficulties. Most patients require hospitalization and many require ventilatory assistance. Okay, I thought, scary as this sounds..we'll get through it, probably have to go through physical therapy, but then we can get on with our lives and put it all behind us. Most sites claimed that recovery starts after 4th week from the onset of the disease and that approximately 80% of patients have a complete recovery within a few months to a year. The next morning, Mike called requesting his feather pillow. I grabbed it along with some reading material for him and went to the hospital for the day. Toward late afternoon, Mike was complaining about tingling in his fingers...he was quickly transferred to the Intensive Care Unit where ventilators would be readily available. Late that night, I recieved a call from the hospital that Mike had complained about not being able to breathe and had to be intubated. He had also had to be sedated because he was trying to pull the tubes out. My oldest daughter Amanda and I went to the hospital immediately, this was probably a mistake. I am the eternal optimist, but the sight of him laying there with the ventilator tube down his throat, unconscious terrified me. I dissolved, I literally fell apart that night. I was gripped by a fear that I couldn't explain and now the one person that I really leaned on and shared things like this with with was unavailable to me. Within a couple of days, Dr Spiller, Mike's neurologist came to me with a Journal article. He showed it to me and explained how high Mike's white blood cell count from his spinal fluid was...this was suggestive of West Nile Virus. He told me he had sent Mike's samples to the CDC (Centers for Disease Control). Now it was a waiting game....till the results were returned.

Mike was kept sedated the better part of the next couple weeks. Physical Therapy would come in and do range-of-motion on his legs. Day after day, we could see the muscles in his legs relax, then shrink...his muscles were wasting away. This period of time was incomprhensible to me....the not knowing, the feeling of being completely alone in the world (even though I was constantly surrounded by people). Finally they decided to bring him out from under sedation, they needed to try and extubate him and get some nutrition into his body. The attempt to remove him from the ventilator failed, so their next step was a tracheostomy. After Mike had the trach, they again attempted to get nutrients into him. Speech came in with blue dye and applesauce. He took a few bites...then they suctioned his lungs. You could see the blue after he was suctioned...it failed. He was aspriating his food, which could lead to aspiration pneumonia. This meant that they would now have to insert a feeding tube to get nutrition into him.

On October 4, 2002 the results were confirmed. Mike had West Nile Virus. Well, at least we had a definate diagnosis. Only now, the certanity of the paralysis reversing itself, as in Guillain-Barre, was no longer there. This meant that there was a strong possibilty of the paralysis being a permanent part of our future. Always the optimist, my mind switched gears, lets just get him through this....many people live rich, full lives in wheelchairs....we can deal with the legs, as long as he has his life.

Part Two: The Battle Continues soon!! (expected May 14, 2009)