Hi @vmg44 I also have my home oximetry test coming up on Dec 21 to see if sleep apnea is related to my increasing RBC and hematocrit. There’s no firm diagnosis of PV for me yet, but the trending upward of my numbers has my transplant doctor who is also a hematologist/oncologist raising his eyebrows. I was surprised by the possible correlation between increasing RBC and sleep apnea.
It will be interesting to see what your and my results reveal. Let me know, ok?
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
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.
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
I also have been diagnosed Nov. 25th with Polycythemia my doctor is highly confident that it is Polycythemia Vera we are still waiting for the test to confirm. My hemoglobin after my first phlebotomy is 20.5 and hematocrit 62.4. I started hydroxyurea 2x500mg a day. My Erythropoietin Level is 1.2mIU/mL. Phlebotomys are scheduled every week until Jan.26. I will meet with the doctor at the end of December to discuss next steps. It seems like we are beginning a journey that started just weeks ago.
I was diagnosed with PV three weeks ago with hemoglobin at 19.9 and a hematocrit of 59.9%. The doctor started me on hydroxyurea and phlebotomy every two weeks. After two weeks my hemoglobin is down to 18.7 and my hematocrit 55.6%. I'm scheduled for a guided bone marrow biopsy in January. Does this sound familiar to anyone?
The specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
Interesting, isn’t it? I never would have put together sleep apnea or lack of sleep together with blood issues. I see your appointment is for Dec 21. The same day (night) when I have my overnight oximetry test. If I don’t have sleep apnea then I may be heading in the same direction of Polycythemia Vera too.
I’d like to know what you find out. Let’s compare notes, ok?
Hi @mordonmordon. Recently, while visiting my hematologist/oncologist for followup appts, my blood work showed an increasing upward trend in my hemaglobin and hematocrit over the past year. One of his questions suprised me when he asked my husband (who was with me) if I snored or if I have sleep apnea!
What?? Well, giggles ensued after I told my doctor that I wasn’t aware of any snoring, but my husband offered up that the EPA should be called in to intervene with noise abatement. Color me chagrined!! Haha.
Anyway, the short of the matter is I have an appt coming up for an overnight oxemitry test to see if I indeed have sleep apnea. Being deprived of oxygen, the body calls for more red blood cells. So not every case of elevated RBC or Hemocrit is Polycythemia Vera.
The specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
Hi @mordonmordon. Recently, while visiting my hematologist/oncologist for followup appts, my blood work showed an increasing upward trend in my hemaglobin and hematocrit over the past year. One of his questions suprised me when he asked my husband (who was with me) if I snored or if I have sleep apnea!
What?? Well, giggles ensued after I told my doctor that I wasn’t aware of any snoring, but my husband offered up that the EPA should be called in to intervene with noise abatement. Color me chagrined!! Haha.
Anyway, the short of the matter is I have an appt coming up for an overnight oxemitry test to see if I indeed have sleep apnea. Being deprived of oxygen, the body calls for more red blood cells. So not every case of elevated RBC or Hemocrit is Polycythemia Vera.
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
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Hi @vmg44 I also have my home oximetry test coming up on Dec 21 to see if sleep apnea is related to my increasing RBC and hematocrit. There’s no firm diagnosis of PV for me yet, but the trending upward of my numbers has my transplant doctor who is also a hematologist/oncologist raising his eyebrows. I was surprised by the possible correlation between increasing RBC and sleep apnea.
It will be interesting to see what your and my results reveal. Let me know, ok?
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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2 ReactionsToday I received results for the JAK2 V617F test and I am positive. A home sleep study is scheduled Dec. 21.
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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2 ReactionsI also have been diagnosed Nov. 25th with Polycythemia my doctor is highly confident that it is Polycythemia Vera we are still waiting for the test to confirm. My hemoglobin after my first phlebotomy is 20.5 and hematocrit 62.4. I started hydroxyurea 2x500mg a day. My Erythropoietin Level is 1.2mIU/mL. Phlebotomys are scheduled every week until Jan.26. I will meet with the doctor at the end of December to discuss next steps. It seems like we are beginning a journey that started just weeks ago.
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2 ReactionsI was diagnosed with PV three weeks ago with hemoglobin at 19.9 and a hematocrit of 59.9%. The doctor started me on hydroxyurea and phlebotomy every two weeks. After two weeks my hemoglobin is down to 18.7 and my hematocrit 55.6%. I'm scheduled for a guided bone marrow biopsy in January. Does this sound familiar to anyone?
Interesting, isn’t it? I never would have put together sleep apnea or lack of sleep together with blood issues. I see your appointment is for Dec 21. The same day (night) when I have my overnight oximetry test. If I don’t have sleep apnea then I may be heading in the same direction of Polycythemia Vera too.
I’d like to know what you find out. Let’s compare notes, ok?
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1 ReactionThe specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
Hi @mordonmordon. Recently, while visiting my hematologist/oncologist for followup appts, my blood work showed an increasing upward trend in my hemaglobin and hematocrit over the past year. One of his questions suprised me when he asked my husband (who was with me) if I snored or if I have sleep apnea!
What?? Well, giggles ensued after I told my doctor that I wasn’t aware of any snoring, but my husband offered up that the EPA should be called in to intervene with noise abatement. Color me chagrined!! Haha.
Anyway, the short of the matter is I have an appt coming up for an overnight oxemitry test to see if I indeed have sleep apnea. Being deprived of oxygen, the body calls for more red blood cells. So not every case of elevated RBC or Hemocrit is Polycythemia Vera.
Do you know if you have sleep apnea?
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1 ReactionMayo Clinic has some information on Polycythemia Vera that might be helpful.
-- Polycythemia vera - Symptoms and Causes:
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
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