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@jackiecarey

Ive had PV for 18 months, at least formally diagnosed ..I noticed my Red Cells increasing slowly over time and mentioned it to my family Doctor. He told me I was dehydrated on several occasions. Finally my right eye went black for 2 minutes and it took 2 minutes for the sight to return..I'm a retired trauma nurse and knew it was a pre stroke so I went to the Emergency Room..They did every test known to man and found nothing. When I returned home I looked at my blood work and noticed all my red cells were well over normal now. I decided enough and went to a Hematologist. As soon as I walked in his office he knew what it was, PV..I had never heard of it so he went on to explain and drew blood for the JAK2..The diagnosis is quite rare in fact I ask medical people if they've heard of it and 90 % say no. My JAK2 was positive..This Hematologist was not a good fit for me so I went to MDAnderson, they insist on doing all the blood work and bone marrow over and again everything was positive a second time. . I'm 77 and had the hydrox dose changed several times. Ive had 2 phlebotomies and did fine. I was very upset at first, read everything. (You Tube has tons of info from academic institutions) I Could find to educate myself..MDAnderson has allowed me to partner in my care and this is what Ive taken from my experience. It takes time to get used to this diagnosis, it takes time to get the right dose of hydrox, it will change (at least mind has) drink about 90 oz of water every day, exercise even when you don't feel like it, eat healthy, and lastly try to stay positive. As I walk through MDAnderson I realize even though I have PV, It easily could be a lot worse...Good luck to everyone and be good to yourself...

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Replies to "Ive had PV for 18 months, at least formally diagnosed ..I noticed my Red Cells increasing..."

Sorry it took your expertise to get you to the right specialist for diagnosis. I have one question. Did they insist on a bone marrow test? PV can be diagnosed solely on your labs and JAK2 positive result. Treatment is the same and I feel like b/c this is so rare they are doing it more for their studies and for the cost. My oncologist said he was fine with me not having the bone marrow test. Unless I incur severe issues, I don’t intend on it.