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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (470)Comment receiving replies
Hi as I’ve recently been diagnosed with PV and have the JAK2 mutation I’m reading all your posts with interest but some of the terminology I don’t understand I was only told that my platelets were high at 500 normal being between 150-400 and I was told because of this I was at risk of heart attack and stroke and have been put on aspirin and also hydroxyurea , big words like hematocrit and EPO don’t mean anything to me could someone explain as I’d like to be able to discuss these at my next visit to haematologist also waiting to get bone marrow biopsy to see the extent of damage
Replies to "Hi as I’ve recently been diagnosed with PV and have the JAK2 mutation I’m reading all..."
@roughanne
Hello. I’m a 59 year old female about three years in with PV and JAK2 positive. My platelets exceeded 800 in the begining.and now I stick around 300-400 taking Hydroxyurea and baby aspirin daily. I would urge you to do your research. PV can be diagnosed soley from your blood tests and a bone marrow test is not always needed. If you feel YOU need it to confirm this diagnosis because it is a big one that’s different but I chose not to do it and my doctor said that was fine. The main question to ask is “Will my treatment plan change from my bone marrow results?” There are only two medications for us to lower platelets and red cells and we all take at least a baby aspirin. Over 60 or if you have other health issues you take a full dose aspirin. Phlebotomist when hematocrit is over 45. Just remember. Clinics and Hospitals are businesses sadly and can push us to do such tests. I dont know if you have other conditions and it is what ever you feel comfortable with but I thought you should know this and do your research first. Good luck!
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@roughanne Hematocrit is the measure of red blood cells as a component of your total blood levels. My doctor used to base his recommendations for a phlebotomy using it. But now he decides that based on my hemoglobin levels.