Polycythemia Vera: Just been diagnosed

Black seed oil thins your blood too.

Thank you for the information. I have had some issues with blood clots in the past prior to my PV diagnosis so I am a bit more concerned over that. I am still trying to push to get back blood thinners or similar meds to help with that since its the main concern.

Thank you all for your wishes. I’m blessed with a loving partner, loving family, friends, doctors and medical support.

Off on a well-deserved 3-day cruise from Florida to the Bahamas with partner and friend.

And, yes, … slathered in SP-40 and SPF summer wear.

Keep your spirits up. Like Michelangelo Signorele said (in a different context), …

IT GETS BETTER!

Stephen

GREAT news!

Yay and yippee to you! That is for sure my goal. Carol

Happy news yesterday. My HCT is now normal, thus no phlebotomy needed. Hydrea seems to be working. Next appointment in 3 months now, on to my vacation to be followed by a bypass in my leg (result of blockage from peripheral artery disease). But, at least PV seems to be under control so there’s that.

Thanks Darryl. Glad to hear you are on the right track right now. Sometimes I question those who practice medicine and some of these restrictions that are placed on them. I was seeing someone who had a hourly 'quota' from a large national medical company. When I finally got hooked up with a good medical school at a state university things began to roll. I hope that I have end results like you. Thanks for the kind comments. Carol

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

Once you get your numbers down, you’ll be able to go about your normal lifestyle. They’ll do an ultra sound to make sure your spleen and other organs aren’t enlarged. Enlarged spleen isn’t dangerous, just uncomfortable at times. My husbands has been for over 20 years due to liver disease. Blot clots is our biggest worry. If you haven’t had issues with that with your numbers high, that’s a really good sign! Hoping for you they get it under control quickly.

I too had a similar issue with my primary care provider. I had already shown signs and symptoms but were ignored. Looking back at my previous test results I had already been off the charts for almost 2 years. It took persistence to advocate for myself to finally get an explanation and referral. I just hope it's not too late to manage it from progressing further.