My Experience with the West Nile Virus

As I mentioned in the "About Me" section, I contracted West Nile Virus almost a year ago, in October 2006. To say that the illness has had a major effect on my life would be to make a tremendous understatement.  The next couple of posts tell the story of what happened when I got the disease, and the days and weeks that followed. 

On Wednesday, October 4, 2006, I stayed home with what I thought was the flu. Around noon the following day, I noticed that I was having difficulty walking. I scheduled an appointment with my doctor for it the following day. On Friday morning, I was shocked to find that I had lost the use of my left arm. 

The physician's assistant whom I saw at my primary care physician's office decided I had not had a stroke, since not all muscles on one side of my body were affected. I took blood tests for various viral diseases, including the  West Nile virus. But, of course, this was Friday, and the test results would not be ready until the following week. 

I stayed in bed most of Saturday, October 7, with no change to the inability to use my left arm or the difficulty I was having walking. Late Saturday evening, in trying to move from the bed to a chair, I fell. At that time, I weighed  about 380 pounds, so we called 911 and asked the fire department paramedics to put me back in bed (it took six of them). Early in the morning of October 8, I fell again. This time, the paramedics transported me to Mercy Gilbert Hospital.

After being stabilized in the emergency room, I was moved to the intensive care unit. By this time, I was pretty terrified since I did not know what was wrong with me. The nursing staff took very good care of me, and the doctors performed various diagnostic techniques, including more blood tests. The results of those tests were available Tuesday, when I was told I had the West Nile virus.

You probably don't know much about West Nile; I certainly didn't before October 2006. There are links at the end of this post with authoritative information from the Mayo Clinic and the Centers for Disease Control about the West Nile virus.  Here's the short version: the virus is spread by mosquitoes, after they've come in contact with sick birds. Only about one in every hundred people who get the virus develops serious symptoms which lead to an understanding they have it.  Approximately 250 people had the virus in Arizona in 2006; eight died. I've met two other survivors, both men, and each was affected differently than I.  One was on a ventilator for five weeks (which he doesn't remember), and nearly died twice. He made a great recovery, regaining use of his arms and legs after months of rehabilitation. The other's arms were fine, but his legs were affected.

My first question after I was diagnosed was, "What do we do now?"  The answer was rehabilitation therapy.  It took 10 days for my Incredibly Understanding Wife to work out the arrangements with the insurance company, but after 10 days in the intensive care unit at Mercy Gilbert, I was transferred to the John J. Rhodes Rehabilitation Institute, a part of the Banner Mesa Medical Center.

I was very lucky to get into the Rhodes Center .  It follows an intensive rehabilitation methodology, with three hours of physical, occupational, speech or cognitive rehabilitation per day, including some work on the weekends. I thought the first two weeks of that schedule would kill me, even though I was still spending 18 hours a day in bed. Eventually, I regained my strength, and began to make significant progress. It seemed as though I might actually returned home after about month of rehabilitation, but then I had a setback.

At the beginning of November, I could no longer do things with my right arm that I had been able to do since the illness struck. I could not hold a phone to my ear; I could not feed myself, I could not brush my own hair or adjust my eyeglasses. The doctors told me I could not go home, and would need further rehabilitation work. I began to panic, and wondered where I would end up living the rest of my life. Visions of dark, foul nursing homes haunted me. Thankfully, Rhodes anticipates these kinds of psychological issues. I had established relationships with a social worker and a psychologist, who were very helpful in helping me keep my perspective and understand my options.

Just after Thanksgiving, I was transferred to Rehab Without Walls, a comprehensive day rehabilitation facility in north-central Phoenix. As part of their evaluative process, I spent two weeks at Rehab Without Walls' residential facility, a home in north Phoenix.  After convincing the therapists that I could live at home, with significant assistance from my wife in the mornings, evenings, and overnight, I was allowed to return home on December 9, 2006.

The bus from Rehab Without Walls picked me up every morning, and took me for six hours of therapy sessions each weekday.  This involved more physical, occupational, some speech, and a tremendous amount of cognitive therapy. The physical and occupational therapists worked to make my legs and right arm stronger, and used range of motion, massage, and electrical therapy (all unsuccessful) to try to coax some movement out of my left arm. The only thing that works for my left arm is water therapy - in the pool. I can move the arm. 

The cognitive and speech therapists worked to make sure that I had not lost any mental or verbal acuity. Thankfully, they concluded that I had not. Gradually, the cognitive and speech therapy sessions were reduced to once a week, then once every two weeks, and we concentrated on physical and occupational therapy. I was the first patient my insurance company had sent to Rehab Without Walls, and once it became clear that I was receiving only physical and occupational therapy, the insurance company stopped paying for this comprehensive service.

I was able to return to work beginning the last week in December 2006, using the telephone and computer to work from home and from the Rehab Without Walls facility.

In April, I began returning to the office one or two days per week. Beginning in May, I returned to the office five days per week. I use a power chair supplied by the insurance company, and I take the City of Phoenix Rapid bus from a park-and-ride location near my home to the State Capitol, with a minimum number of stops in downtown Phoenix.   My employer has been a   tremendous support to me, and has allowed me to hire a young man who is an administrative assistant as well as a licensed Certified Nursing Assistant, who assists with my personal care during the day. Having someone of my rank within my department testing the degree to which our facilities are appropriately adjusted for those who are disabled has been an eye-opener. Door openers have been fixed, and doors have been widened to accommodate my fairly wide wheelchair. Again, I could not have asked for more support from an employer than I have received from mine. Since I also supervise a program which provides services to the disabled, it has been doubly beneficial to me to learn about how to live with a disability.

Overall, I consider myself very fortunate. I have a wife who still loves me, even though I'm more difficult to deal with these days both physically and emotionally, due to the stresses of this illness. I have a tremendous group of relatives and friends, who have done nothing but offer me continued support and encouragement. Those who work with me have cheered me on, and continue to urge me to do more and better.

I think the reason why I have been able to approach this misfortune in a positive way is first of all because I am lucky enough to have been "wired" as a positive person. For me, it isn't a question of whether the glass is half-full or half-empty... in my mind, the glass is always overflowing. As well, I have had a very fortunate life experience, portions of which I hope to share with you in future posts to this web log.  I must remind myself every day that it would be unreasonable of me to become spiteful or react bitterly to this unfortunate event in the face of everything good that has happened to me in the previous 55 years.

So, on we go... facing and overcoming challenges, and making improvements as we go.  Thanks for sharing the journey. 

 

 

Comments

[Phil]

Thanks for sharing this, Dad! Awesome to get some of the details!

[Matt]

Wow, I really had no idea it was that serious. Glad you've recovered well and you're optimistic about it all, too! Very cool post.