Don’t be, just trust your specialist. It is manageable with medication.

I’m a 56 yr old female and was just diagnosed with PV in January Jak2 positive. It’s been a shocker and a roller coaster ride thus far. Taking HU and having phlebotomies has brought my numbers down. Still trying to get to some sort of routine, correct dosage and schedule with phlebotomies. Currently getting labs every other week. From what I’ve read, we can live a pretty normal life once it’s under control.

Good morning, @csgreetings and welcome to Mayo Connect. So many of us in this support group have been exactly where you are…receiving a new diagnosis and not knowing what to expect. While Polycytmenia Vera (PV) is considered a blood cancer it is generally very slow to develop and as @inevanmac mentioned in her reply to you, it is often managed with medication and sometimes phlebotomies, which removes excess blood.

Here are a couple of websites that give some helpful information about PV, symptoms and treatments.

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https://www.hopkinsmedicine.org/health/conditions-and-diseases/polycythemia-vera

The benefit this amazing support group is to be able to connect with others who are sharing a similar experience. In the discussion posted below you’ll be able to meet @doris4benny @pamdg @arlenerun @nypara66 @seamus1010 and others or family members who have PV.
Polycythemia Vera: Just been diagnosed
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

Regarding altitude, this is a reply I posted for another member who has PV and concerned about the impact of high altitude. https://connect.mayoclinic.org/comment/737086/

Were you having any symptoms before your diagnosis? Did your hematologist mention if you have a JAK2 mutation which can be a cause for PV?

Thank you all for your comments. A tough or scary road is always easier with friends and mentors. Carol in New Mexico

An unexpected complication has occurred in my situation.

I developed peripheral artery disease which led to a blocked femoral artery. To correct that, I had an angioplasty and a stent about two years ago. Subsequently, I was diagnosed with PV. Recently, the stent found to be occluded and will need to be replaced very soon. The occlusion is most likely due to the excess RB cells and platelets.

I found out 5 months ago and realize I had it for some time.It gets better in time as you get a schedule for hu and blood drops.It is scary at first and such a surprise but this site has given me much info and support.Hope you all have a good day.

Oh thank you Albert, I needed to hear this. Though I don't have concrete answers yet, I have a feeling the same is with me as far as time line. I had all kinds of blood work done last year, and sadly this doctor didn't do a CBC on me at that time. If only!!