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Polycythemia Vera and Nutritional Ketosis

Blood Cancers & Disorders | Last Active: Jul 22 5:35pm | Replies (54)

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@jackiecarey

Hello I was recently diagnosed with Polycycemia Vera?I will be transparent I'm a health care professional more more importantly I believe in this old guy called Socrates who said "I don't know anything, question, question question! It's in y nature, too. I noticed that my hemoglobin, hematocrit and platelets were slowly increasing over time..I would mention it to my medical Internist who would say its dehydration several times. Then in December I had a total black out in my right eye. I was able stay calm and timed it, it lasted about a minute before it completely resolved..I knew that is a TIA or mini stoke so I went to the ED..They did everything known to man looking for the root cause..Nothing was found. The neurologist put me on an aspirin...When on got home I went on MY Chart and notice that now my H &H and Platelets were now over normal. I said enough and made an appointment with a hematologist. On my first visit the hematologist walked into the room, sat down and sat you don't have leukemia and then said you have polycythemia vera..I was utterly shocked. The blood work didn't support leukemia and I had never heard of Polycyceia Vera..Even with my background. Apparently PV is so rare many Doctors have never heard of it. It was a surreal day...Shock, fear...They drew my blood then to identify the JK2 gene mutation, it came back positive as expected. I'm in a holding pattern but not for long I suspect..I'm getting a second opinion but not sure why probably not to wish I had later on....The Hematologist is a PV specialist at MDAnderson and I see her in two weeks. I'm 75 and wonder if anyone else has been diagnosed with PV at this age and what their experience
has been? I'm very open and willing to share or support in any way I can.

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Replies to "Hello I was recently diagnosed with Polycycemia Vera?I will be transparent I'm a health care professional..."

What did you recently learn from your hematologist regarding diet and exercise?

And how are you doing now? I was diagnosed with PV about 7 months ago at 72– very similar story about problem eyes, looking at old test results, etc. I too never heard of PV, and I’m pretty medically savvy also. I’m thinking of MDAnderson for another opinion too. Currently phlebs and low-dose aspirin and many supplements to keep the clotting away. Might you share your experience at MDAnderson? It would be a long trip for me, but my life is worth it!