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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)
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@learnandlive

I have had PV with JAK2 for over 4 years. Started with phlebotomies and Hydrea, now on Jakafi. I just recently found sleep apnea may be related to PV. Sleep study will be done in March. If anyone has info on apnea and PV please post, thanks

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Replies to "I have had PV with JAK2 for over 4 years. Started with phlebotomies and Hydrea, now..."
Lori, Volunteer Mentor | @loribmt | Dec 10, 2022

Hi @learnandlive I recently learned that PV can be related to sleep apnea as well. My RBC and Hematocrit continue to rise for no reason. I was so surprised when my transplant doctor asked me out of the blue at my last visit, if I snored or have sleep apnea! I was shocked to hear my husband reply that I did, with lots of joking. LOL.
Anyway, I’m surprised because I really don’t fit the profile of sleep apnea as I don’t have any of the daytime symptoms of being exhausted, distracted, foggy, etc. And I’m not overweight but, I’ve learned in this lifetime we don’t all fall into neat little packages for a diagnosis.
My doctor wants to try the sleep apnea route first before testing for JAK2. Since this is slowly developing and I already had a bone marrow transplant for another blood disease.
My sleep study will be coming up on Dec 21. So I’ll let you know more. If we have sleep apnea it would explain why our body (kidney’s actually) to call for more oxygen and then our RBC manufacturing kicks into high gear.

Let’s keep in touch, ok?

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