Thank you for your encouragement! It is very scary being diagnosed with something so rare and then watching your blood tests go up and down for months. Still trying to get my HU dosage right but I try to stay positive and grateful that the meds do do their job. I’m a 56 yr old female was has never had any health issues or even any daily meds until now so this was a shocker!
If you wake up gasping, that can a sign of sleep apnea. An Overnight oximetry test is super easy and very inexpensive for a doctor to order. It might be worth talking to your doctor about the possibility. I had no idea the connection with SA sleep apnea and the possible rise in hemoglobin and hematocrit. I do hope you find the cause soon so that you can start feeling healthy again. Let me know what you find out, ok?
Hello, have just read read posts about sleep apnea. I have had PV with JAK2 for six years. phlebotomies, Hydrea, now Jakafi have managed it and life is enjoyable. I am scheduled for sleep test May 28 and am very curious to see how sleep disorders may affect this condition. I have read many reports that it does have a effect. Anyone new to PV/ JAK2 keep positive it takes time to adjust meds and outlook but it can be very manageble.
I dont know. I don't snore except very rarely (usually after weeks of insomnia and I finally pass out hard) I do find myself kind of gasping awake sometimes the last several months though. I really don't know what to think. I haven't felt good in years, but everything seems to have really escalated since April 2022 with that unprovoked clot 🙁
If you wake up gasping, that can a sign of sleep apnea. An Overnight oximetry test is super easy and very inexpensive for a doctor to order. It might be worth talking to your doctor about the possibility. I had no idea the connection with SA sleep apnea and the possible rise in hemoglobin and hematocrit. I do hope you find the cause soon so that you can start feeling healthy again. Let me know what you find out, ok?
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.
I dont know. I don't snore except very rarely (usually after weeks of insomnia and I finally pass out hard) I do find myself kind of gasping awake sometimes the last several months though. I really don't know what to think. I haven't felt good in years, but everything seems to have really escalated since April 2022 with that unprovoked clot 🙁
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! (:
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.
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! (:
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!
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! (:
Thank you for the information. I have had some issues with blood clots in the past prior to my PV diagnosis so I am a bit more concerned over that. I am still trying to push to get back blood thinners or similar meds to help with that since its the main concern.
Once you get your numbers down, you’ll be able to go about your normal lifestyle. They’ll do an ultra sound to make sure your spleen and other organs aren’t enlarged. Enlarged spleen isn’t dangerous, just uncomfortable at times. My husbands has been for over 20 years due to liver disease. Blot clots is our biggest worry. If you haven’t had issues with that with your numbers high, that’s a really good sign! Hoping for you they get it under control quickly.
Thank you for the information. I have had some issues with blood clots in the past prior to my PV diagnosis so I am a bit more concerned over that. I am still trying to push to get back blood thinners or similar meds to help with that since its the main concern.
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Thank you for your encouragement! It is very scary being diagnosed with something so rare and then watching your blood tests go up and down for months. Still trying to get my HU dosage right but I try to stay positive and grateful that the meds do do their job. I’m a 56 yr old female was has never had any health issues or even any daily meds until now so this was a shocker!
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1 ReactionHello, have just read read posts about sleep apnea. I have had PV with JAK2 for six years. phlebotomies, Hydrea, now Jakafi have managed it and life is enjoyable. I am scheduled for sleep test May 28 and am very curious to see how sleep disorders may affect this condition. I have read many reports that it does have a effect. Anyone new to PV/ JAK2 keep positive it takes time to adjust meds and outlook but it can be very manageble.
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Like -
Helpful -
Hug
2 ReactionsIf you wake up gasping, that can a sign of sleep apnea. An Overnight oximetry test is super easy and very inexpensive for a doctor to order. It might be worth talking to your doctor about the possibility. I had no idea the connection with SA sleep apnea and the possible rise in hemoglobin and hematocrit. I do hope you find the cause soon so that you can start feeling healthy again. Let me know what you find out, ok?
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1 ReactionHi Lori,
I dont know. I don't snore except very rarely (usually after weeks of insomnia and I finally pass out hard) I do find myself kind of gasping awake sometimes the last several months though. I really don't know what to think. I haven't felt good in years, but everything seems to have really escalated since April 2022 with that unprovoked clot 🙁
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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5 ReactionsHopefully 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!
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2 ReactionsJust 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! (:
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1 ReactionBlack seed oil thins your blood too.
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3 ReactionsThank you for the information. I have had some issues with blood clots in the past prior to my PV diagnosis so I am a bit more concerned over that. I am still trying to push to get back blood thinners or similar meds to help with that since its the main concern.
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2 ReactionsThank you all for your wishes. I’m blessed with a loving partner, loving family, friends, doctors and medical support.
Off on a well-deserved 3-day cruise from Florida to the Bahamas with partner and friend.
And, yes, … slathered in SP-40 and SPF summer wear.
Keep your spirits up. Like Michelangelo Signorele said (in a different context), …
IT GETS BETTER!
Stephen
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