with platelets that high your very lucky you didnt have a clot form, TIA or even a stoke. You demonstrate very clearly how important the care we're getting from our hematologist is..my story s long, I written about it several times so won't bring it up again..I'm very lucky to live in Houston and I have a myloprolferatve specialist caring for me..It's important that you're allowed to be a partner in your care and that you educate yourself. another thought, in our situation (the rare incurable blood disease) its very important we find the best care. I'm of the mnd that a large academic institution s a safe place to be..Since you have a place in Minnesota you could go for your initiall visit at MAYO and then most of the rest can be done by zoom visits for venous blood draws orders and if necessary phlebotomies from Mayo by partnering with a doctor were you live.
To the person who mentioned they decided not to take medication for personal medical conditions and only use phlebotomies for care. I don't want to interfere with your thought process..I'm told the medication we take for the PV is to keep phlebotomies to a minimum.. After all in the end the bone marrow constantly making the cells will eventually wear it out as we progress toward mylofibrosis.. Don't take my word for this and I don't know your history but I would be sure you can't take any of the available medications. I'm 3 years In NOW TAKE HYDREA 500 7 DAYS A WEEK with had 6 phlebotomies ..This is after me making a point of my CBC numbers slowly and consistently increasing..I was told it was dehydration..When I first went on hydro I was very upset , it took a while for me to understand but now I take the medication without a thought and when I have my blood drawn for results I'm more worried about having a phlebotomy then the medication.. Again, don't take my word for it however, hydrea is my life line now. I wish you good health...