Polycythemia Vera

I turned 50 in November of 1997 and in Feburary of 1998 I was told I had Polycythemia Vera.  I was also told that I had only 10 years to live.  I went on Hydroxeura in Feburary of 2004 and in August of 2010 I took my last one.  They Hydroxeura caused me to stop producing blood.  I had had 29 phlebotomies from Feb 1998 to Feb 2010.  From July 2010 to August 2010 I had five blood transfusions.  In Nov of 2010 I was told I was in my final stage.  In Dec of 2010 my hematologist told me to forget what she said in November, I was producing blood again.  I had had 10 phlebotomies since January 2011.  In July of 2011 I had two heart attacks within four days of each other.
I am doing better now, have my blood checked on a regular basis as before but now it is more important since the two heart attacks.
I worked for a nuclear weapons plant in Aiken, S.C. for 28 years.  They will not admit that I got pv by working there.  However, I know from talking to two doctors that they are treating seven people that worked there for pv.  That is just two doctors and there are hundreds of doctors in our area and many of them may be treating people with pv.
I talke one day at a time and have since I was diagnosed with polycythemia vera.  I have also tested positive for JAK2.  I also have fiber rather than bone marrow.
I hope I have explained this enough for you to understand what I have been going through for the past 13 or 14 years.
My name is Harry and I am 64 years old.
harry62 harry62
1 Response Nov 19, 2011

harry i am 56 i have the same thing. You can live a long life if you get treated right. take aspairins too.<br />
i feel sorry for you because i too suffer,hope you have a wife who is supportive. You should read my post. they say people with pv can live a normal life this is not normal.all we do is suffer and suffer till we die. i have itchy all over, cant breathe been to the hospital many times, nausea sweating gee anything else.<br />
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here is a joke to cheer you up why doesnt santa clause wife get pregnant????<br />
cause santa comes once a year......lol have a happy, HEALTHY, SAFE HOLIDAY....