DH>ÿ@SUBJECT:Wegerner's Granular Myatosis                                N
DH>We agreed to (actually requested) an autopsy, in hope that it would add to 
t
DH>fund of information and perhaps help others in the future.
I'm sorry you lost your daughter.  It's a terrible thing to have to bury
one's child.  This happened to my sister a couple of years back, and I
don't think she will ever recover.
As to Wegener's -- I have no new information for you.  But I am curious
what was found during the autopsy.  In what ways did it confirm the
diagnosis, and were you given a report?  Or was the diagnosis not sure
until after the autopsy?
Also, I think your attitude about the autopsy is commendable.  I
recently observed a couple of those...and am aware what a great
teaching/learning experience they are for everyone.
DH>(We do not blame the doctor, even though several people suggested that we 
su
DH>for malpractice, since he didn't recognize the disease. That is nonsense. 
He
DH>human, like all of us. His knowledge is finite. We have been led to 
understa
DH>that there are only about 25 cases a year in the U.S.. He had never seen a 
c
DH>and the hospital had never seen a case. How can we blame him?)
How refreshing to see this kind of attitude.  As you know, the symptoms
of Wegener's tend to be, especially at first, rather vague and
resembling the flu.  Like you say, doctors are not infallible, and they
feel terrible when they make a mistake or error in judgment.  All health
care workers do.  And the pressure to be perfect is tremendous.
I think you have reconciled your terrible situation as best as anyone
could.  I'm sure you gained the respect and admiration of anyone who
became aware of your situation and the way you handled it.
 * SLMR 2.1 * I'd rather be on-line
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