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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Mar 20 8:31am | Replies (392)

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@loribmt

Hi @themyth, with Polycythemia Vera, too many red blood cells are produced resulting in the high hematocrit number. With the tightly packed red blood cells, blood movement can become restricted, essentially starving your body for oxygen. That’s why you have such extreme fatigue. Having the phlebotomy removes some of those excess red blood cells to bring that number down again.

Some important things to note, is that you need to stay hydrated. The rule of thumb is about 11 cups of fluids per day, it doesn’t mean just water.
With your phlebotomies, it’s also suggested to drink quite a bit of water the day before and the day of the procedure. Then have a ‘saline’ IV chaser immediately after the phlebotomy to help replenish your electrolytes and fluids.

Was there a diagnosis given with your PV? Did you have any genetic testing run for the JAK2 gene?

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Replies to "Hi @themyth, with Polycythemia Vera, too many red blood cells are produced resulting in the high..."

Yes get results this Wednesday.

The genetics test was negative. I do remember that. This has been a blur for me. Really shocked me. I’m still trying to gather as much information as possible. I check a lot of the boxes with things that go with it. Scary