Yes they did the JAK test. We're not worrying about clotting because 28 years ago I had open heart surgery so I am on Warfarin all the time and my INR is checked monthly to weekly. And I am 82 years old but very active I've been out in my garden this morning. And I have done research on any of my conditions so much so that I have even done my own diagnosis.
Ok! Thanks, the extra information you gave now makes more sense for the phlebotomies without a forma diagnosis. ☺️ I’m jealous of you being out in your garden! Mine are still buried under many feet of snow! Hoping to see some spring flowers soon, but I’m not holding my breath. 🌷
Yes they did the JAK test. We're not worrying about clotting because 28 years ago I had open heart surgery so I am on Warfarin all the time and my INR is checked monthly to weekly. And I am 82 years old but very active I've been out in my garden this morning. And I have done research on any of my conditions so much so that I have even done my own diagnosis.
First time using this. I have not been dx with PV but hemoglobin has been high for a couple years and hematocrit also. Been seeing Hemotologist and had 2 phlebotomies a year apart. He doesn't seem too concerned.
Good morning, @serenity55 I love your @name of Serenity. It’s a word in my morning affirmations…and what we all wish for in our lives. ☺️
Phlebotomies can be used in conditions where there is an elevated hemoglobin (too many red blood cells) and having a high hematocrit number which measures the portion of red blood cells in your body.
Blood is removed from the body to lower that count to normal. Too many red blood cells can cause a host of issues, the biggest concern being blood clots. It can also lead to other blood cancers. So, I’m scratching my head a little as to why your hematologist isn’t concerned about your condition.
My concern is that without a diagnosis just removing the excess blood from you body isn’t telling you the entire story of what’s causing the higher manufacturing in the first place.
Have you had another other tests run besides your CBC to check for a genetic mutation such as JAK2 which can cause Polycythemia Vera? Has your hematologist suggested a daily aspirin to avoid clotting? How often do you see him for blood work?
First time using this. I have not been dx with PV but hemoglobin has been high for a couple years and hematocrit also. Been seeing Hemotologist and had 2 phlebotomies a year apart. He doesn't seem too concerned.
Dr. Trina Poretta, DO She’s with Comprehensive Cancer and Hematology in Cherry Hill and was recommended by my niece, a doctor. She’s very good and a good bedside manner.
Dr. Trina Poretta, DO She’s with Comprehensive Cancer and Hematology in Cherry Hill and was recommended by my niece, a doctor. She’s very good and a good bedside manner.
My phlebotomies have been all over the place , at one point I went 4 months without one. Another time 2 months. Is that the HU? Who knows at this point? Stay well , good luck🙏🏻
I’m on my third year with PV. Took HU for six months before developing an allergy to it. Now on my second year taking Jakafi. Blood check every month with phlebotomy as needed. Usually two to three months. Some people are able to go much longer taking Jakafi.
I think I meant to say some sort of routine. Currently doing labs every other week and that determines if I need it. I’m just assuming it kind of levels off at some point? Like an average length of time between phlebotomies? Thanks for your thoughts and keep me posted as well 😊
My phlebotomies have been all over the place , at one point I went 4 months without one. Another time 2 months. Is that the HU? Who knows at this point? Stay well , good luck🙏🏻
My phlebotomies are never routinely scheduled. We do blood work every month and if not aren’t great we do one. But I am continually on HU. Second guessing that at the moment. Not sure why that drug. I’ve had two dr opinions but may seek another. Good luck to you and keep me posted.
I think I meant to say some sort of routine. Currently doing labs every other week and that determines if I need it. I’m just assuming it kind of levels off at some point? Like an average length of time between phlebotomies? Thanks for your thoughts and keep me posted as well 😊
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My husband was just diagnosed with PV. His iron level is also very low. Tomorrow he starts iron infusions. Do any of you have a similar problem?
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1 ReactionOk! Thanks, the extra information you gave now makes more sense for the phlebotomies without a forma diagnosis. ☺️ I’m jealous of you being out in your garden! Mine are still buried under many feet of snow! Hoping to see some spring flowers soon, but I’m not holding my breath. 🌷
Yes they did the JAK test. We're not worrying about clotting because 28 years ago I had open heart surgery so I am on Warfarin all the time and my INR is checked monthly to weekly. And I am 82 years old but very active I've been out in my garden this morning. And I have done research on any of my conditions so much so that I have even done my own diagnosis.
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Helpful -
Hug
2 ReactionsGood morning, @serenity55 I love your @name of Serenity. It’s a word in my morning affirmations…and what we all wish for in our lives. ☺️
Phlebotomies can be used in conditions where there is an elevated hemoglobin (too many red blood cells) and having a high hematocrit number which measures the portion of red blood cells in your body.
Blood is removed from the body to lower that count to normal. Too many red blood cells can cause a host of issues, the biggest concern being blood clots. It can also lead to other blood cancers. So, I’m scratching my head a little as to why your hematologist isn’t concerned about your condition.
I’ve posted a link to the Mayo Clinic website so you can read a little more about Polycythemia Vera. https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
My concern is that without a diagnosis just removing the excess blood from you body isn’t telling you the entire story of what’s causing the higher manufacturing in the first place.
Have you had another other tests run besides your CBC to check for a genetic mutation such as JAK2 which can cause Polycythemia Vera? Has your hematologist suggested a daily aspirin to avoid clotting? How often do you see him for blood work?
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Helpful -
Hug
2 ReactionsFirst time using this. I have not been dx with PV but hemoglobin has been high for a couple years and hematocrit also. Been seeing Hemotologist and had 2 phlebotomies a year apart. He doesn't seem too concerned.
Thank you.
Dr. Trina Poretta, DO She’s with Comprehensive Cancer and Hematology in Cherry Hill and was recommended by my niece, a doctor. She’s very good and a good bedside manner.
I’m on my third year with PV. Took HU for six months before developing an allergy to it. Now on my second year taking Jakafi. Blood check every month with phlebotomy as needed. Usually two to three months. Some people are able to go much longer taking Jakafi.
My phlebotomies have been all over the place , at one point I went 4 months without one. Another time 2 months. Is that the HU? Who knows at this point? Stay well , good luck🙏🏻
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Like -
Helpful -
Hug
1 ReactionI think I meant to say some sort of routine. Currently doing labs every other week and that determines if I need it. I’m just assuming it kind of levels off at some point? Like an average length of time between phlebotomies? Thanks for your thoughts and keep me posted as well 😊