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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Mar 20 8:31am | Replies (392)Comment receiving replies
Just following up. My Jak2 was negative and my EPO was 5. I don't know what that means as far as a PV diagnosis, but, I see my hematologist on Wednesday and I'll be sure to check back in to let you all know. I hope everyone is doing well! (:
Replies to "Just following up. My Jak2 was negative and my EPO was 5. I don't know what..."
Several months ago, my hematocrit and hemoglobin numbers were continuing to rise after recovery from a bone marrow transplant. We wanted to see numbers go up but not to keep climbing. Since my husband is my ‘caregiver’ and still tags along to my appts, I was a bit chagrined when my hematologist asked my husband if I snored! LOL.
Embarrassment ensued as I really felt certain that the answer would be no! Hah, well…anyway…the reason he wanted to know was to see if I had sleep apnea. That can cause the change in the EPO number you were talking about. (I had a sleep apnea test and do not have that) But I did add more vigorous aerobic workouts to my day to increase the EPO and my numbers have stabilized.
Erythropoietin (EPO) is a hormone that your kidneys naturally make to stimulate the production of red blood cells. When a person has sleep apnea, the amount of oxygen in the body diminishes and that triggers the kidneys to call for the production of more red blood cells if the erythropoietin level is too low.
Here’s a link to that information:
https://my.clevelandclinic.org/health/articles/14573-erythropoietin
Your doctor may ask you the same question…do you possibly have sleep apnea?
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Hopefully good news! Could be just Polycythemia, not PV. If so they’ll do tests to see what’s causing it and you can be treated. Hoping it’ll be something g simple and they can treat you and you’re done. Polycythemia Vera is a lifelong disease but just Polycythemia is not 😊 Good luck!