Story about West Nile Virus .

A West Nile Virus story

Jun 28, 2017


This all started when I was bitten by a mosquito!  It happened sometime around the end of September 2014, probably while I was working in the yard.  Didn’t feel right for a week or so and developed severe tremors.  Went to Immediate Care and “against medical advice” went back home.  That evening my wife drove me to the ER and I was admitted on October 1.  That is the last thing I remember clearly until I was leaving Community Hospital in Munster Indiana on October 23, having spent over three weeks, 14 daysof which were in ICU suffering from an acute, aggressive case of West Nile Virus. 
 My first clear memories after being admitted to the hospital were on the ambulance ride from Munster to Marianjoy Rehabilitation Hospital in Wheaton.  I was placed in the acute care unit and would stay there for two months.  The effects of West Nile Virus, at least the type I had, are extremely debilitating.  I was very weak, couldn’t walk, couldn’t lift my left arm above my waist, couldn’t sit up on my own and was transferred from bed to wheel chair via a Hoyer lift and sling.  My mind was scrambled, I could not write, had no appetite, in short I was a mess. 
Most patients at Marianjoy are there for a relatively short time.  I would be there until December 23.  The doctors, nurses and especially the therapists were wonderful and although there was still quite a bit wrong with me when I was discharged I was in much better condition when I left than when I entered.  Three hours of speech, occupational and physical therapy, six days per week will do that.  In spite of all this when I left Marianjoy I was still in a wheel chair, not yet able to use a walker and totally unable to navigate stairs.  The reason I left Marianjoy was that my insurance benefits for that level of care were used up.  The next question was where do I go?
 Our house has more stairs than most.  To get to our bedroom one must go up six steps into the main level of the house, two more to the foyer, thirteen to the second floor and six more steps down to the bedroom.  A technician for a stair lift company said he had never seen a house less conducive to a handicapped person.  Our house was not an option.  We began to look at selling and moving into a ranch style house and explored the possibility of in-patient care at other facilities.  Our neighbors came to our rescue.  Our next door neighbors, an older couple had passed away, the wife a few years ago and the husband several months ago.  Their children had not yet sold the house and they offered to allow my wife and me to live in the house until they were ready to put it on the market.  The house was a single level and had modifications for a handicapped person.  It was an absolute life saver.  We moved in on December 23 and stayed until May 16.  By then my physical condition had improved to the point where I was able to handle stairs, although with great difficulty. 
 Another issue upon my discharge from Marianjoy was what to do about therapy.  Ultimately, based on insurance and other factors, we decided to do day rehab with the Rehabilitation Institute of Chicago (RIC) at their Homewood facility.  They offered occupational and physical therapy and provided transportation to their location, a major issue since my wife was still working.  I had already “graduated” from speech therapy and was no longer receiving this type of treatment.  I started day rehab on December 26 initially intending to attend five day per week, three hours per day.  After learning more about our insurance benefits and attempting to maximize our benefits we decided on a three day per week, four hours per day (two hours  occupational therapy, two hours physical therapy) schedule.  We later reduced this to two days per week to stretch out our benefits.  I continued day rehab until insurance required that it end.  My discharge date was April 10.  I had a limited number of sessions left and entered out patient physical therapy with RIC at Silver Cross Hospital.  I was down to two days per week, forty five minutes per session.  These benefits ran out and my last day of therapy was May 21.  So far our insurance has refused to extend my therapy. 
 Currently I wear a KAFO (Knee ankle, foot orthosis), a full leg brace on my left leg.  Until a couple of weeks ago I had an AFO (ankle, foot, orthosis) on the right leg but I am no longer using the AFO hoping to further strengthen my right leg.  I haven’t use the wheel chair since moving back into our own house.  I can walk with a walker and brace and have begun to walk with forearm crutches.  I have a long way to go to get back to normal but have come a long way from being at one point close to death. 
 I could never have gotten this far without the help and support of so many people.  In addition to the professionals who treated me (doctors, nurses, therapists) I have received much help and support from my family.  Their visits and assistance with moving and helping me with exercises has been invaluable.  The use of the house next door was a true lifesaver, gift from some generous neighbors that I can never repay.  There was no way I could have succeeded in our own home when I was originally released from the hospital.  Cards, visits and phone calls from friends and relatives helped me to keep a positive outlook.  I appreciate the “You are looking good” comments even though they were not true.  Most of all I have to thank my dear wife, Kathy, who has been with me throughout the entire ordeal.  She is my number one “doctor, nurse, therapist, dietician” and wife and I would not be where I am today without her.  This was written about a year after WNV onset.  I will update when some more time.
 

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