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| Phillip |
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Around mid January 1999 while vacationing in Florida I contacted what was ultimately
diagnosed as Viral Encephalitis. It first began with night sweats flu like symptoms and
a high level of irritation which caused me to be in a constant state of activity. I was up
all night, had to keep moving, could not stay still, and in addition I had a stiff neck
and a moderate temperature. After visiting local Doctors and hospitals with no results
my symptoms getting more pronounced. I did not experience headaches, or seizures, as
others have but I did shiver violently at night. I soon progressed to a point where my
wife could not handle me so it was decided that I should return home to Needham, MA.
where my wife could get some family support, and I was admitted to a local hospital
where I was known. This began what was the beginning of a four month spell of stays
at five hospitals and medical facilities.
For most of this time I lived in a state of hallucination. Real objects like buildings,
rooms, corridors. walls, ceilings, etc., completely lost their shape size dimension,
all were fluid, voices sounded like they were coming to me from the next room or out of
doors. I was constantly shivering with fears that I had never known and cold beyond
belief. It constantly appeared to be raining outside with the accompanying raw coldness.
I did not lose conciseness. I was completely incoherent. At this time as a result of
tests that were done it was found that I had several cysts on my left kidney some close
to the blood supply and the consensus of opinion was that it should be removed. My wife
bore the responsibility of having to approve this. I was oblivious of the kidney removal
procedure from, preop to the operation to discharge. I continued to be kept in one
hospital then another for the next few months. I remained at one hospital until they ran
out of answers then sent to another. At no time did the medical profession come up with
any magic bullet which was responsible for my getting better. I was made better by my own
immune system. What was accomplished in the hospitals was to keep me as quiet as possible,
keep me under 24 hour surveillance. As previously mentioned, being in an agitated state I
had to keep moving, walking. As I think back I must have walked several nurses aides into
the ground with the around the clock need to accompany me on my sojourns around their
hospitals. I was probably the most known person that ever spent time at each hospital
due to the familiar sight I presented walking the halls day and night.
I have read of other problems people have had headaches, fevers, etc. my main complaint
was the hallucination I was constantly in. I developed a respect for the way Hollywood
depicts mental patients from their vantage point, They are extremely accurate. I can
accept the spinal punctures and bone marrow tests and others, while not pleasant, they
were still not as bad as the lack of reality I lived with. There just seemed to be nothing
solid to hang on to. Like others this whole experience left me not exactly enthralled
with the skills of the doctors I was seen by. There were some very nice ones and others
not, but their understanding of the disease, leaves much to be desired.
The one saving grace was that 6 months prior to this happening I left an HMO that I had
been with and a primary care physician That I had developed no respect for. The
hospitalization that I had was unexcelled and Some of the lead physicians that took care
of me were good. I suffered from no lack of treatment due to insurance limitations.
Fortunately I made the change to my medical coverage without knowing at the time that
it probably saved my life. The treatment and care I received was probably as good as it
could be.
I am now a year downstream from getting out of the hospital. For months I had excellent
in house support from several therapists and councilors, all of whom were very helpful.
I have now been discharged by all my doctors and medical aides and see my physicians for
routine checkups and as needed. I have improved very much mentally and except for a case
of polymyalgia [arthritus] that the disease left me with, and that's pretty much under
control, I am in good shape. I walk two to five miles every day unless I play golf and
then I walk the course. My balance is somewhat affected which holds me back from playing
better. My biggest complaint is that I have a good deal of anxiety, and I'm quite
depressed for which I am seeing someone. But on the whole I feel that I will continue
to improve to what extent I don't know. I am the oldest person that I have heard of to get this disease, I don't know if that's because the others in my age group just didn't survive or they are not on the Internet. In any event I am extremely grateful for my recovery, I look forward to its continuance and I do appreciate the friends I have made in connection with the encephalitis support group. I feel that I have profited very much by my involvement with them and wish to increase it.
I owe my recovery to the superb support that I had from my wife, my three children. Their spouses and my grandchildren who made it possible for my children to support me the way they did. I shall never forget what was done for me.
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Phillip
Needham MA, U.S.A.
Posted: August 31, 2000 |
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