Hello @itsmepeggysue, welcome to Connect. It’s a mixed welcome because I’m happy you found us, though not happy that you have Polycythemia Vera. But you came to the right place. As you can see you’re not alone with this blood condition. There are several members in our support group for PV and they’re willing to share their experiences and offer support.

Since you’re new to the blood disorder, I thought I’d load you up on some reading material. PV is considered a blood cancer but it’s generally slow to develop and is managed with medications to impede its progression.

It’s actually in a classification of blood conditions referred to as Myeloproliferative disorders…where the bone marrow is producing too many of a particular blood product whether it’s red or white blood cells or platelets. In your case it’s red blood cells.
The Jak2 mutation (which happens randomly) is frequently the culprit behind PV. Though it can happen without the mutation. Jak2 tricks the marrow into over production.

I’ve posted a link to that information on Jak2 below, along with a few others on proliferative neoplasms and PV. Knowledge is power and it will give you a head start with potential questions to ask your hematologist
https://www.mayoclinic.org/departments-centers/myeloproliferative-disorders-group/ovc-20201578
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
https://www.verywellhealth.com/jak2-mutation-5217909?utm_campaign=686803700-432030&utm_source=bingpaid&utm_medium=con&utm_content=73255250357400&utm_term=o-polycythemia%20vera-polycythemia%20vera&msclkid=7ef15edfde441187c31e3aecf739f7b2
It’s encouraging that you found a better hematologist. It’s important to find someone you trust to give you the proper diagnosis and help you along with the right treatment plan. I know how frightening it can be when you receive an unexpected diagnosis like this. I had a very aggressive form of leukemia a few years ago. It clipped me off at the knees!! I’d done everything right in my life…but cancer, unfortunately, doesn’t care. It had other plans. But now, 4 years later I’m healthy, active and feel as though nothing ever happened. So please don’t fear the worst because often, the stories we tell ourselves are worse than reality.

In your case, with all the symptoms you’re having, starting the treatment will be a relief. Medication can often help bring the blood levels down to get you feeling healthy again.
Are you taking any blood thinners at this time?

I'm with you, though I immediately associated myself with a university medical system, and they have nailed it from the beginning. I've been told for years - if you can, get associated with a university medical college/university. So glad I did. I'm still in the process, but my numbers are quite similar to yours. Fingers crossed for both of us! Carol