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
I know this is probably not going to help, but 15 years is quite a long time. You can pack a lot into that time. It sucks to know you are going to die but we all are. You have an advantage of knowing it and you can use that as a driver to do some real meaningful stuff in the time you have left.
By contrast there are plenty of people alive today, who are your age who will be dead in 15 years and have no idea. They will very likely not do anything meaningful with their time. They have no driver.
You can make video journals for your child. Record your perspective on their growing up. Tell them how much you love them and are proud of them so that when you are gone they never doubt it. Set up an email account for them and email them from time to time. Leave a record of your life with them so when they grow up they know you and understand you and what you did for them.
You can go on more holidays, doesn’t have to be expensive, just has to be with them. Spend time with your family instead of at the office. Show up for them. Make every moment with your children count.
Then when you go. You’ll leave them with memories of you that are epic. Memories they have in their head and memories they can watch out read and never forget you and the awesome parent you were.
15 years is a long time. If you are lucky there might even be a medical breakthrough in that time. Our understanding is rapidly increasing and outcomes are improving all the time. In 15 years your 15 years might be 20. In 20 years maybe even more.
You have a lot of living to do and with the timer ticking you’ll probably do more of it than the rest of us.
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
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.
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.
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.