Please take a moment to introduce yourself to the community. Everyone here has something to share about Polycythemia Vera. For the discussion boards, we ask that you keep your full name and location private.
Hi I’m Steve,
I’m interested in Polycythemia because I was diagnosed with the condition a couple of years ago.
I have regular check up’s at the Hammersmith Hospital UK.
Since my diagnosis I have now also been diagnosed with type 2 diabetes, for which I take insulin 4 times a day,(cannot have the pills due to lactic acid production.)
I slipped into a hyperglycemic coma last December for a period of 8 days.I didn’t know I was diabetic and apparently I was probably ill for quite a few years with it.
Since being on insulin and attending regular blood tests it would appear that my Polycythemia is getting better and at the last check up the doc was so pleased he asked me to return in 6 months.
There’s always a light at the end of the tunnel.
What a great idea this is. I have been diagnosed with PV for about a year and a half. I was very sick last winter, and finally got a diagnosis by typing in each symptom into google. I printed out the resulting diagnosis and went to my physician. . .(who had no idea at all). She looked at me coming with a printout in my hand and said . . .“oh, you’re one of those”. Meaning one of those who had figured it out by themselves. Anyway, I was with a hematologist within hours, and now I’m in the best health in years.
Thanks so much to all who make internet self care such a reality. Count me in.
My doctor and I discovered that I had Polycythemia Vera about 7 years ago. I live in Los Angeles, CA.
I have poloycythemia secondary. I just want to learn from others that have this and maybe I can use something that I learn here.
I have had this since Dec. 03.
I am a 41-year-old male living in rural Iowa. I was diagnosed with PV about 4 years ago when I collapsed and was sent to the doctor who noticed my face and skin was beat red. I eventually was diagnosed with PV. I have been told my PV was mostly caused by the radiation treatments I went through after have a cancerous growth removed. I take Hydrea and my levels are fine. Besides that, I coach and referee soccer, work for ISU Extension and love it, work for a scout camp during the summer, and work with cub and boy scouts. I love to backpack and camp. I have a wife who is supportive and we found out I had PV while we were engaged (and she still married me).
Am from United-Arab-Emirates Dubai, I had Polycythemia Vera for the last ten years.
52 yr, old female-diagnosed with polycythemia vera almost 20 years ago. My paternal uncle, grandmother and great aunt all expired of this disease but were in their late 60’s when diagnosed. Am married 28 yrs, and have 4 grown kids. Am doing fairly well with PV; have had 2 doses of P-32 and currently using phlebotomy every 8wks. Thanks for inviting me to join–I wish all of you well!!!
Hi! I am Henry Cook, age 69 and live in No. Calif. I was diagnosed with PV in June of 2003. My doctor says it is the least of my health issues. I feel blessed. I am tested monthly. I have to have a phlebotomy every 3-5 months. I take hydroxyurea cap 500mg once daily.
I have had PV for 12 years and am getting ready to go to Johns Hopkins in July for a 2nd opinion before I stop HU and go to Gleevec.
My name is Yona and I have had PV for 8 years. I am 59. I learned a lot from members of polycythemia-vera yahoo group. I am interested in exploring ways we can help ourselves, diet, lifestyle, etc., and also in the latest progress in a future gene therapy.
I have had this danged stuff since 1995. The iching, the blood draws, the hair loss due to HU, low platlets, low white counts, swelling in the legs and hands, and so on and so on, and so on. Like every one tells you, you won’t die from PV, but sometimes you wish you could! Each and every day is another new adventure! Jan
Would like to be able to keep up with all the new information about polycythemia as it is a condition I live with.
At the moment I am having no problems but I know that is because i have the right treatment for me.
Hi, my name is Steven. I am a 43 y/o w/m diagnosed 6 mos. ago with polycythemia.
My husband is recently diagnosed with PV.
Hello. I am a 43 year old single mom with chronic health issues and multiple food allergies. I am hoping to learn and share healing information with others.
son was diagnosed with polycythemia vera and wanted to find out more info from others diagnosed with same
Recently diagnosed with this and looking for information.
Randy 48 years old male live in Henderson, NV I have had condition for 2 years.
I was diagnosed with this condition three years ago. I am interested in any treatments, etc.