Ha! Has anyone walked into the Dr. and said, "hey, I think I have this?". So, to answer your question about symptoms - a lot of pain (but chalked it up to being old). a lot of exhaustion (but chalked it up to high demanding job/life), and some memory issues - but chalked it up to all of the above. Since the age of 26 I've experienced panic attacks which typically started from a heart palpitation or feeling dizzy - always chalked this to anxiety. I still have much to find out about this, and despite anything I read, my goal is to keep my life exactly as it is now (maybe less memory problems, dizziness, exhaustion, and joint pain) for as long as I possibly can, From that, come what may.
New here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google - I saw hematologist last Friday. Trying to determine if it is primary or secondary. Not much out there about this, I never heard of it prior and wondering about the ability to maintain a normal life. I work a very demanding sedentary job that I love. Where can I find information about prognosis and treatment? Is this going to consume my life as I know it?
Welcome to Mayo Connect, @ausableriver I’m happy you found us and decided to bypass Dr Google. While there are worthwhile information sources some of those sites lead down rabbit holes filled with needless stress and anxiety.
You were recently diagnosed with Polycytmenia Vera. While it is classified as a type of blood cancer it is often very slow to progress and generally controlled through phlebotomies (having blood drawn to reduce the volume of red blood) and when needed, there are medications to help keep things in check.
New here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google - I saw hematologist last Friday. Trying to determine if it is primary or secondary. Not much out there about this, I never heard of it prior and wondering about the ability to maintain a normal life. I work a very demanding sedentary job that I love. Where can I find information about prognosis and treatment? Is this going to consume my life as I know it?
@margrethe Wow your numbers aren’t that high so I will think positively that you wind up being negative. They will do a Jak2 blood test to confirm PV. It can take weeks for results. May I suggest you call to see if you can do it before your visit so the results will be in time for visit? The waiting is torture! This site really does help and make you feel like you’re not alone ❤️
I agree with these comments. Your #’s are not that much out of whack especially considering how much they came down after increasing your water consumption.
I’m betting a lot of the reason for your #’s and symptoms is related to dehydration. Stay on top of that day and night- even if it causes you to need to pee a lot more. Do that all the way till your July visit. And let us know how that goes. Best of luck.
I am a 25 year old female and was diagnosed with PV about two weeks ago. I believe it is more of a preliminary diagnosis since my hematology/oncology appt isn’t until July 17th. Anyway, the numbers that caught the doctors eye was my hemoglobin at 16.8 and hematocrit at 49.8. I got more blood work a month later to see if I could get it lowered and I did, to a 15.8 and 45.8. I did this by more water intake (as I am always dehydrated), aspirin and exercise. I am very nervous about my Oncologist appointment coming up but it is a ways away and I still am battling fatigue and shortness of breath every day. Should I push for more blood work and for some sort of immediate relief? Or just ride it out and see what they say in July. I am very nervous about the diagnosis and my doctor hasn’t said much else so I am left to google and to stress myself out. After the diagnosis now I really just want to know more and what I need to do to feel better.
Thank you for moving the post! And yes, I try to over do it a lot of times and I can’t keep up with my fiancé or friends when we are active. I have found that walking works for me. I will use my inhaler and wait it out if I can’t catch my breath, but a brisk walk has helped a lot.
@margrethe Wow your numbers aren’t that high so I will think positively that you wind up being negative. They will do a Jak2 blood test to confirm PV. It can take weeks for results. May I suggest you call to see if you can do it before your visit so the results will be in time for visit? The waiting is torture! This site really does help and make you feel like you’re not alone ❤️
I also think the numbers aren’t extremely high! The symptoms are spot on with what I’ve been struggling with, but after the month of personal lifestyle changes and aspirin the numbers did lower. I decided to ask for another round of blood work today just to see where we are again. I mentioned to my doctor about the Jak2 mutation and she assumes the Hematology/Oncology place will do all of that. We will see. I do hope, even if it is proven to be the wrong diagnosis, that they can find something to help with these symptoms. It is so disheartening to run in circles. Thank you for your reply.
@margrethe Wow your numbers aren’t that high so I will think positively that you wind up being negative. They will do a Jak2 blood test to confirm PV. It can take weeks for results. May I suggest you call to see if you can do it before your visit so the results will be in time for visit? The waiting is torture! This site really does help and make you feel like you’re not alone ❤️
I am a 25 year old female and was diagnosed with PV about two weeks ago. I believe it is more of a preliminary diagnosis since my hematology/oncology appt isn’t until July 17th. Anyway, the numbers that caught the doctors eye was my hemoglobin at 16.8 and hematocrit at 49.8. I got more blood work a month later to see if I could get it lowered and I did, to a 15.8 and 45.8. I did this by more water intake (as I am always dehydrated), aspirin and exercise. I am very nervous about my Oncologist appointment coming up but it is a ways away and I still am battling fatigue and shortness of breath every day. Should I push for more blood work and for some sort of immediate relief? Or just ride it out and see what they say in July. I am very nervous about the diagnosis and my doctor hasn’t said much else so I am left to google and to stress myself out. After the diagnosis now I really just want to know more and what I need to do to feel better.
Cindy1209-- Met with the Dr 4/18 and still at a loss- waiting for the results of the JAK2 test? Have no appoints until the results come back. It will make a difference on where I go for the blood drawl- Our son is in the hospital for pneumonia-- trying to still get things in order. Thanks for caring- will write more later
Sarah
Hi Sarah, you haven’t posted an update and I was wondering if you’ve had any news regarding your JAK2 test for PV? How is your son feeling after his pneumonia? Is he well now?
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Ha! Has anyone walked into the Dr. and said, "hey, I think I have this?". So, to answer your question about symptoms - a lot of pain (but chalked it up to being old). a lot of exhaustion (but chalked it up to high demanding job/life), and some memory issues - but chalked it up to all of the above. Since the age of 26 I've experienced panic attacks which typically started from a heart palpitation or feeling dizzy - always chalked this to anxiety. I still have much to find out about this, and despite anything I read, my goal is to keep my life exactly as it is now (maybe less memory problems, dizziness, exhaustion, and joint pain) for as long as I possibly can, From that, come what may.
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3 ReactionsWelcome to Mayo Connect, @ausableriver I’m happy you found us and decided to bypass Dr Google. While there are worthwhile information sources some of those sites lead down rabbit holes filled with needless stress and anxiety.
You were recently diagnosed with Polycytmenia Vera. While it is classified as a type of blood cancer it is often very slow to progress and generally controlled through phlebotomies (having blood drawn to reduce the volume of red blood) and when needed, there are medications to help keep things in check.
Primary PV is caused by an acquired mutation which can happen randomly. It’s most frequently the mutation of the JAK2 gene. When that happens the defect can cause uncontrolled cell production as in PV where the red blood cells in overdrive.
https://www.healthline.com/health/polycythemia-vera
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Secondary Polycythemia doesn’t involve a mutation but the cause can be from an underlying condition such as kidney, lung or coronary problems, sleep apnea, some medications.
https://www.healthline.com/health/secondary-polycythemia
There is an active support group for members with PV. I’ve posted the link below where you can meet members @pmm, @robinll @nypara66 @learnandlive @itsmepeggysue @new2this @seamus1010 @csgreetings and many more.
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Were you having symptoms which led to your diagnosis or was this a random find during a blood test?
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3 ReactionsNew here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google - I saw hematologist last Friday. Trying to determine if it is primary or secondary. Not much out there about this, I never heard of it prior and wondering about the ability to maintain a normal life. I work a very demanding sedentary job that I love. Where can I find information about prognosis and treatment? Is this going to consume my life as I know it?
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Like -
Helpful -
Hug
2 ReactionsI agree with these comments. Your #’s are not that much out of whack especially considering how much they came down after increasing your water consumption.
I’m betting a lot of the reason for your #’s and symptoms is related to dehydration. Stay on top of that day and night- even if it causes you to need to pee a lot more. Do that all the way till your July visit. And let us know how that goes. Best of luck.
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4 ReactionsVery boarder line.👍
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1 ReactionThank you for moving the post! And yes, I try to over do it a lot of times and I can’t keep up with my fiancé or friends when we are active. I have found that walking works for me. I will use my inhaler and wait it out if I can’t catch my breath, but a brisk walk has helped a lot.
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Helpful -
Hug
2 ReactionsI also think the numbers aren’t extremely high! The symptoms are spot on with what I’ve been struggling with, but after the month of personal lifestyle changes and aspirin the numbers did lower. I decided to ask for another round of blood work today just to see where we are again. I mentioned to my doctor about the Jak2 mutation and she assumes the Hematology/Oncology place will do all of that. We will see. I do hope, even if it is proven to be the wrong diagnosis, that they can find something to help with these symptoms. It is so disheartening to run in circles. Thank you for your reply.
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Like -
Helpful -
Hug
2 Reactions@margrethe Wow your numbers aren’t that high so I will think positively that you wind up being negative. They will do a Jak2 blood test to confirm PV. It can take weeks for results. May I suggest you call to see if you can do it before your visit so the results will be in time for visit? The waiting is torture! This site really does help and make you feel like you’re not alone ❤️
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2 ReactionsHi @margrethe, I can imagine with such a new diagnosis, yet to be confirmed you have many questions. I moved your post to this existing discussion
- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can browse the previous posts and connect easily with other PV members like @robinll @nypara66 @learnandlive @itsmepeggysue @new2this @seamus1010 @csgreetings and many more.
I understand your wish to improve your symptoms of shortness of breath and fatigue while you wait for your appointment with the hematologist.
You might find that these breathing exercises help both with shortness of breath and the anxiety you're experiencing:
- Looking for breathing and lung strengthening exercise videos https://connect.mayoclinic.org/discussion/looking-for-exercise-videos/
Good for you for exercising. Have you found a good way to find the right amount for you and to pace yourself?
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3 ReactionsHi Sarah, you haven’t posted an update and I was wondering if you’ve had any news regarding your JAK2 test for PV? How is your son feeling after his pneumonia? Is he well now?
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