Welcome @sammy123 (Sarah). I popped your message over to this existing discussion:
- Polycythemia Vera: Just been diagnosed: https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

I did this so you can catch up on the posts from other members new to polycythemia vera and the helpful PV-ers that share their experiences like @albertedward @nypara66 @csgreetings @doris4benny @pamdg @rabab101 @inevanmac @seamus1010 @chadknudson @mordonmordon @mongoglb39 @vmg44 @buckaroobanzai and many more.

Sammy, I'm sure you have many questions. What would you like to ask fellow members living with PV?

Hi Sammy,

Well, there are two types of polycythemia: polycythemia vera and just plain old polycythemia. PV is a very VERY slow growth cancer while its Plain Jane cousin polycythemia is non-cancerous. Both cause the bone marrow to produce and pump out too many of one or another blood cells (in my case, my body produces too many red blood cells). This means we tend to have 'thick' blood; our hearts must work harder to push all that blood around our bodies, and the blood has a hard time squeezing through tiny capillaries. And this in turn means that some parts of our body do not always get enough oxygen. The 'thick' viscous blood makes us susceptible to blood clots and heart attacks.

OK. So now that I have scared you (unnecessarily), let me remind you that even if you have the cancerous form, you can live for decades if you receive proper treatment. I suspect that's what your MD means by 'not fatal.' So don't let all of the above get you down. This disorder is easily treated.

Interestingly enough, in the early years, both types of polycythemia generally cause the same annoying symptoms. Itchy skin, brain fog, higher heart rate and blood pressure, and exhaustion are my primary issues. Anyhow, because the symptoms are generally the same for both PV and P, we generally receive the same treatments, at least at first. I receive monthly therapeutic phlebotomy, which is really just like donating blood, and take low-dose 'baby aspirin' twice per day. I do very well on that regimen.

Sooner or later, some people must take a medication to slow down the production of whatever blood cell your bone marrow seems to 'favor.' I have not reached that point, so I will leave others to tell you about that phase.

Try not to worry. Let your MD treat your signs and symptoms, be compliant, and you can be OK.