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Essential Thrombocythemia

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Subject: RE: Essential Thrombocythemia
Date: 05/08/2008

Allison,

<>Was pleasantly surprised to see your email.  I
have heard nothing since I posted my plea and I thought maybe no one
cared!  

<> I am sure that we are in for quite
a battle, but the fact is, my husband served 2 tours in Vietnam in the
I Corp as a  MCB133 (construction batallion).  When I went
out and searched AO, the map that came up for Vietname said the
heaviest concentrations of spraying was III Corps, followed by I
Corps.  He did the plumbing,  and a/c and remembers the
barrels that you spoke about.  He has been going to the VA for
medical help as we can't afford health insurance for him, since he is
considered "high risk" with this disease.  The fact that they have
taken this disease off the list really bothers me as they must have at
one time considered it a factor.  He goes to the VA on next
Thursday for an examination regarding his claim.  I know he is
concerned how that will all work out.  I don't think we can prove
that AO caused this, but can they claim it didn't?  No one else in
the family has it.  He has two sons, they are in their middle 30's
and they don't have it.  

For right now, he is doing
well.  He regulates his own medication.  When he had good
health insurance, he was put on Interferon shots, Anagrilide, and
Hydrea.  The shots and Anagrilde were not good to him - he was so
druged, he didn't know where he was at at time.  He did to up to
the Mayo Clinic for quite some time.  He was on Anagrlide (sp)
then and the doctor told him if he could get his platelett count down
to a certain number, he wouldn't have to take more medicine.  When
the results came back, he platelett count had dropped so he shouldn't
have had to take more, but that doctor told him he needed to take the
extra dose.  We found out later from the VA hospital that he never
should have been on that medcine as he has stints in his heart AND that
doctor was heading the study on the Anagrlide medicine.  How crazy
is that - and it took a doctor from the VA to tell us that.  So
over the years, we have just learned to regulate the medication
ourselves.  Different doctors come and go at the VA and they all
want to cure him, but truth be told, they can't help him with all the
more medicine they want to give him - just makes him have large mouth
sores and that is worse than the disease.

If you have any
suggestions, we would greatly appreciate it.  We have spoken to
our local VA office and they seem to want to help.

 

Again, thanks for your response.  It's so nice to hear from someone out there who knows what we are going through.

Jean & Frank Wood 

Messages History for "Essential Thrombocythemia"

  1. Essential Thrombocythemia
  2. RE: Essential Thrombocythemia
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  5. RE: Essential Thrombocythemia
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  7. RE: Essential Thrombocythemia
  8. RE: Essential Thrombocythemia
  9. RE: Essential Thrombocythemia
  10. RE: Essential Thrombocythemia
  11. RE: Essential Thrombocythemia
  12. RE: Essential Thrombocythemia
  13. RE: Essential Thrombocythemia
  14. RE: Essential Thrombocythemia
  15. RE: Essential Thrombocythemia
  16. RE: Essential Thrombocythemia
  17. RE: Essential Thrombocythemia
  18. RE: Essential Thrombocythemia
  19. RE: Essential Thrombocythemia
  20. RE: Essential Thrombocythemia
  21. RE: Essential Thrombocythemia
  22. RE: Essential Thrombocythemia
  23. Myeloproliferative Disease Support and Daily Digest
  24. RE: Myeloproliferative Disease Support and Daily Digest
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