The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,950. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    hbneil Registered Users
    Currently Being Moderated

    Neicy,  Happy to meet you but wish it was under different circumstances.  I'm Neil dxed 2009 at age 59 with PV.  All of my docs say that if I take care of myself and keep my blood counts under control with meds and phlebotomies, I can expect a "normal" life expectancy.  If the rest of your health is good, don't think that you only have 10-15 years left. I had a heart attack at 49 and the PV at 59 so I have a couple of strikes against me but I try to stay healthy and active.  (I wonder what will happen when I'm 69.)  I've ridden my bicycle 4000 miles each year for the past 3 years and this summer I climbed to the top of Half Dome in Yosemite.  Except for the meds and the occational phlebotomy (about every other month) I live a normal life. Don't let the diagnosis get you down.  None of us know exactly how much time we have.  My attitude is to enjoy life as much as I can while still taking care of myself. 


    Welcome to the group!  Switch over to "Part 4" on the LLS site.  Everyone else is there.


    Neil

  • 1,951. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
    Currently Being Moderated

    Here is the link for part 4 just incase you are having problems finding us.   I am Pauline (wee pea) i live in Scotland, UK.  Diagnosed with pv june 2009 aged 38, jak2 +, on 1g of hydrea 5 days a week and 500mg 2 days a week.   I too, like you read the 15 years prognosis BUT please dont take no notice of that OK.  I am a nurse and have nursed a patient who has had pv for 30yrs & they were in their early 60's.  SO dont worry about that side of this disease.  It is frightening and we have all been there and know how your feeling.  See you on part 4 ok..http://community.lls.org/thread/10246?start=540&tstart=0

    wee pea

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