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

  • EABOD25@lemm.eeOP
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    2 months ago

    I know I do, and thank you for saying that. I’m just so terrified right now. RN I’m 36 years old and it’s just hard to know I’m going to die before 50. My wife and I got married less than a year ago, and and for her, it just seems like a total waste of time. I don’t know how I will explain all of this to her

    • frazw@lemmy.world
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      2 months ago

      See my other comment and comments of others. It is by no means certain that you have 15 years. I googled life expectancy for polycythemia and quickly found that people under 60 have longer prognosis. You are way under 60. I don’t know how much that counts but I’m sure it does. As I said before the average life expectancy today, for all the people who already died is 77. It isn’t very different to the life expectancy for everyone with or without your condition.

      Look into the risk factors. See which you have, avoid those you can control. Find a specialist, get a second opinion. Get treatment. But try not to despair. I am a hopeful person, particularly with science and medicine, but I see genuine reasons for hope in your case. E.g. You might find there are a lot of smokers in the studies which came to those numbers of 20 years. Don’t smoke? You are likely in the above average set. Do smoke? Stop and get into the above average set. Overweight? Lose it. Use your diagnosis to live a better life. All those things I say I will do tomorrow? You’ll be doing them today. Every time you feel sad about the diagnosis, strengthen your resolve to live your best life. Every time you look at your family and think about your diagnosis, use it as a reason to do, or plan something memorable. I’m sure there are other things you can do. Be proactive, take as much control as you can, but still do all of those things lie video journals and packing on memories for your family. Even if you live to 94 they will still appreciate it all and so will you.

      Don’t give in to despair, don’t give in to the prognosis. Live your best life.

      • takeda@lemmy.world
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        2 months ago

        Exactly this doesn’t work like some timer that suddenly expires, when you turn 60-70 a lot of things start to break and your body might have more difficulty handling additional stress caused by the chronic disease and medication.

        But at 35 the body is strong.