polycythemia vera

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polycythemia vera

by maky59 on Mon Mar 23, 2009 12:00 AM

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Hi I'm Claire, I was diagnosed in November 2008 with Essential Thrombocytosis. I went to see my hemotologist again on March 2, 2009 and now my diagnosis has changed to one of PV{Polycythemia vera}. My platelets are at 1.14 million and I also have acquired the JAK2 mutation in my DNA. I had my first phlebotomy last Thursday. That needle was big. I went to Costco on the weekend and bought some EMLA cream. I will use it one hour before my next phlebotomy to ease the very big pinch that I felt. Also this could be because my veins are tiny. I have been taking one-81 mg aspirin a day since October on the advice of my hemo doc. It will reduce the stickiness of the blood. I have done a lot of research. Maybe too much, but when you have a rare disease you need to have the information you need to understand what is happening inside your body. so you can ask the appropriate questions and see what the pros and cons are of the treatment options etc... It is also very important to get some online support as I don`t look sick though I am very very tired all the time, and people do not perceive you as being sick. I have found great information on MPD Research Consortium,, MPD-List , MPD Online Support. I would like to hear from anyone recently diagnosed with PV, as well as from anyone who has lived with it for a few years or longer. My next phleb. is on April 7 and maybe after two more I will start to feel better. I am also sick of the constant ringing in my ears too. My phleb. nurse said that my counts were probably up from what they were on Mardh 2, maybe thats why I have this ringing noise. It is hard to run a small home daycare. As soon as the kids leave I lie down on the sofa for the night. Thank goodness my kids are 17 and almost 19. Hope to hear from someone soon. I take each day as it comes and try to have a laugh or two and to keep in a positive frame of mind. Thanks for listening, Claire from Canada

RE: polycythemia vera

by dep4life2 on Tue Apr 21, 2009 12:00 AM

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On 3/23/2009 maky59 wrote:

Hi I'm Claire, I was diagnosed in November 2008 with Essential Thrombocytosis. I went to see my hemotologist again on March 2, 2009 and now my diagnosis has changed to one of PV{Polycythemia vera}. My platelets are at 1.14 million and I also have acquired the JAK2 mutation in my DNA. I had my first phlebotomy last Thursday. That needle was big. I went to Costco on the weekend and bought some EMLA cream. I will use it one hour before my next phlebotomy to ease the very big pinch that I felt. Also this could be because my veins are tiny. I have been taking one-81 mg aspirin a day since October on the advice of my hemo doc. It will reduce the stickiness of the blood. I have done a lot of research. Maybe too much, but when you have a rare disease you need to have the information you need to understand what is happening inside your body. so you can ask the appropriate questions and see what the pros and cons are of the treatment options etc... It is also very important to get some online support as I don`t look sick though I am very very tired all the time, and people do not perceive you as being sick. I have found great information on MPD Research Consortium,, MPD-List , MPD Online Support. I would like to hear from anyone recently diagnosed with PV, as well as from anyone who has lived with it for a few years or longer. My next phleb. is on April 7 and maybe after two more I will start to feel better. I am also sick of the constant ringing in my ears too. My phleb. nurse said that my counts were probably up from what they were on Mardh 2, maybe thats why I have this ringing noise. It is hard to run a small home daycare. As soon as the kids leave I lie down on the sofa for the night. Thank goodness my kids are 17 and almost 19. Hope to hear from someone soon. I take each day as it comes and try to have a laugh or two and to keep in a positive frame of mind. Thanks for listening, Claire from Canada

 

Hello, Im 31 and just was told yesterday that i also have Polycythemia Vera.  I have been doing lots of test for past year.  Wow, i feel healthy other then being really tired and now suffer from headaches.  I think im in shock.  The hard part is telling my beautiful pregnent wife and our daughter.  The Dr said if i dont start blood draws, then i can expec t to live about 2 years as research has shown.  That is not alot of time.  Soooo needless to say i have a blood draw on monday!!!  This is soooo crazy and unexpected. so what should i expect??
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