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Polycythemia vera (PV): Does altitude matter?

Blood Cancers & Disorders | Last Active: May 12, 2023 | Replies (8)
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@lavender28

Hello, dear people....good to meet you.... I'm newly diagnosed PV...and just trying to navigate all this. I'm really pissed off I have this. My hematologist says that Venasection is not appropriate bcz it will make the condition worse. My iron is already low. Ugh. Tired.
So I'm going to do compassionate phlebotomy at the blood center once every 3-4 months or so, at my hematologists suggestion. It's free. Should help lower RBC. Plus I'm on aspirin & eat foods known to be natural blood thinners. Hematologist is ok with it. So....I have no "secondary conditions" that would have kicked off PV. I'm JAK2 negative. Jak2 is apparently not 100% my hematologist said. I believe I am Primary PV. Hematologist is reevaluating my numbers. But what does it matter?? All data suggests that both conditions, Primary PV & erythrocytosis (secondary PV) have the exact same pathology. I'm thinking it's like diabetes 1 and diabetes 2? - one you're born with ... and one you acquire ... but same pathology. I cant seem to pin my hematologist down on my life expectancy. The web is all over the board on that topic. Wish we could all meet for dinner somewhere! :)) All comments welcome. Hugs.

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Replies to "Hello, dear people....good to meet you.... I'm newly diagnosed PV...and just trying to navigate all this...."
Lori, Volunteer Mentor | @loribmt | May 12, 2023

Hi @lavender28 Welcome to Mayo Connect. It helps to know you’re not alone in a diagnosis. There are a number of members in the forum who have also been diagnosed with Polycythemia Vera, whether with the acquired mutated Jak2 gene referred to as Primary PV, or secondary PV which is generally caused by an underlying condition where there is a decrease in oxygen to the tissue such as high altitude, sleep apnea, kidney disease, etc., which can stimulate the kidneys to increase erythropoietin production…calling for a increase in red blood cell production. If you don’t have any other chronic conditions occurring has your doctor checked you for sleep apnea?

Here are a couple of current discussions with members @charliebriggs1godforall @inevanmac @jerrlin and others talking about their experiences with shortness of breath:

~Any suggestions for chronic shortness of breath with PV?
https://connect.mayoclinic.org/discussion/chronic-shortness-of-breath-with-pv/
Another discussion:
~ Polycythemia Vera: Just been diagnosed
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Meet members @lindaw123 @treeore @nypara66. @itsmepeggysue, and others with PV.

Another good article about PV: https://www.osmosis.org/answers/polycythemia

I completely understand the anger for finding out you have a blood disorder. My life was perfect and then, wham, I was diagnosed with an aggressive form of leukemia 4 years ago. Now in durable remission after a bone marrow transplant, life is back to 98% normal. But it comes as a shock and we feel our bodies have let us down. As they say, “‘stuff” happens. (Cleaned that up for the forum, LOL).

I think you’ll be hard pressed to find doctor who will give you a life expectancy. You can be perfectly healthy and get hit by a bus tomorrow. I had less than a 50% chance at survival for 6 months…and here I am 4 years a later with a ‘normal’ life expectancy. So if I can encourage you at all, keep living each day to the fullest. Your life has changed but it’s not over.
Having a phlebotomy (another term for Venesection) is one of a couple treatment options. There are medications, such as Hydroxyurea which can slow the production of red blood cells. How often will you be having followup appts to have your labs done?

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