So I was recently diagnosed with polycythemia and the doctors words were literally "holy fuck! They didn’t tell you this 7 years ago???

I’m having a very hard time right now because people with this condition are expected to only survive 20 years after the diagnoses. Meaning I have less than 15 years to live. I’ll never see my child graduate high school. I’ll never see them get married. I’ll never get to meet my grandchildren… this sucks. I’m so terrified right now. What am I supposed to tell my wife? What am I supposed to tell my parents? I’m going to die before all of them? How did I upset the universe to deserve this? I’m so scared and I don’t know what to do. L

  • frazw@lemmy.worldEnglish
    0·
    20 days ago

    P.s. I don’t know how old you are, but the life expectancy seems to be based on age. From what I could find, 20 years from diagnosis is the average for everyone but did you realise the average life expectancy for polycythemia patients is 77? That means most are older. People under 60 have a better prognosis averaging 24 years from diagnosis. You might even get longer than that, its an average after all. Are there any statistics that zero in on your age more? Was your prognosis based on your own individual assessment and risk factors or a lazy doctor simply saying “You have this condition and the average prognosis it 20 years so you’ve got 15 left”

    I am not a medic, and I’m not trying to give you false hope but maybe your individual situation is worth looking into more.

    Also remember these stats are always based on people who already died. They were diagnosed 20 years ago at minimum. They didn’t have access to today’s medical technology as their disease progressed over 20 years. You not only have access to today’s, but will also have access to tomorrow’s.

    I’m sure there are plenty of things that will help manage your condition too. Live healthy, give yourself the best chance to be above average. Don’t smoke. Cut back on the alcohol. Take baby aspirin. Exercise more. Yada Yada. Beat the odds.

    Report back here in 30 years when you grand kids are sleeping on your chest.