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
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That sucks omega balls. Seek assistance from a professional mental health expert, not from randoms on the internet.
Not many get to choose how they go out, and its hardly ever fair. I dont have that much advice, but your loved ones do deserve to know. They will be as blindsided as you were with this new information. The only advice I can give for certain is spend every moment you can with the ones you love.
I don’t get to choose. My genetics chose. I haven’t even told my wife this news yet and I know what the response is going to be
What did I do to not be allowed to be a grandfather. Why can’t I spoil grandkids? What did I do? What do I have to do to get that oppurtunity. Someone please fucking tell me what to do. I’ll do whatever I need to. I don’t want to die
This is statistics, it doesn’t mean it has to be like that in your case.
Also I just read about it more, so it is like the opposite of anemia?
I see there are primary and secondary variants. The secondary for example can be caused by multiple things like sleep apnea so using CPAP can reduce it.
You should also consult another doctor and see what s/he says.
BTW when parent poster said that not many people choose how they got out, is actually true. For example you could be perfectly healthy 20 year old one day and next day have a fatal car accident. In your case is a bit bad, because how your doctor said it implied that the clock is ticking.
I’m not a doctor, but also have a chronic disease and with those predictions basically the way it works is gradually your health deteriorates quicker with the sickness and will be harder and harder to manage or the side effects of drugs you take also can cause problems etc etc.
Wikipedia says that untreated people die 1.5-3 years if untreated, and 10-20 years when treated. But it also says that most people are diagnosed in their 60s and that’s the patients the 10-20 years number was calculated from, which is close to natural life expectancy.
I would see another doctor to get their perspective. Chance is that you will live to old age as well.
BTW also if your sickness is caused by sleep apnea make sure you get CPAP. Sleep apnea can cause all kinds of issues (that might not even seem related) when not treated.
Negotiation is one of the stages of grief, if I’m not mistaken. This is a heavy grief situation, definitely.
You’ll go through the stages, and continue to feel it until you’re gone, probably, but once Acceptance sets in, you’ll be able to make the most of the time you have left! ❤️
I wish you the best, and tell your family and friends the bad news so that they can get through their stages of grief as quickly as possible too, so you can all start living the rest of your years not taking each other for granted.
Run as many scams as you can on lenders also
Not the time or the place for jokes.
May not be a joke. Might just be unethical life pro tip. I mean fuck it, right? Why NOT take out a huge loan? Buy a huge ass house, and sell it to your wife for $1 a year later?
With diagnosis 10-20 years that’s just statistics and statistics have outliers.
Second, after reading more about it I think OP doesn’t have to worry about it. It indeed says the prognosis is 10-20 years but the sample used for this estimate was ~60 years olds (most common age when the condition is diagnosed) and I think his doctor missed that part.
I would recommend to see another doctor to confirm this.
I’m not a medical professional but is this “timeline” the opinion of one doctor? If this news came from an individual I think it could definitely be worth seeing what other doctors have to say. If you have access, maybe even see a specialist who has more experience with that condition. Maybe they agree with the verdict, but they might also give ideas to manage it and help extend the clock.
I’m not going to tell you not to be scared or sad because those feelings are entirely valid and I would feel the same way. I just think more information could only help at this point.
Certainly wouldn’t hurt for some other opinions! Totally agree here
I have a bit of perspective to add as I have experienced something similar but a bit different. I was disabled by a driver in a SUV while riding a bicycle to work and barely (not hyperbole) survived.
Morn your loss. It is okay to do so. You just lost a loved one, a part of yourself, but don’t get lost to the point where the despair causes further harm to the person you are in the present. We all must play our best game given the cards we are dealt in life.
Someone else’s problems do nothing to change your own. However, on the bright side, knowing a diagnosis is a wonderful luxury. It means you can plan, get help, and have your options laid out for you.
I have spinal problems that are in the rarest part of the back that can be injured. I have no effective diagnosis. There are times when I have weird things happen with my nerves and vision that make me wonder if all the damage I had around my brain stem will one day cause me to die suddenly. I am forced to lay around and watch life pass me by while being a burden to my family and unable to socialize or escape the prison of my limited mobility. I can walk and exercise regularly, but can’t sit up or stand for very long at all; I can’t hold posture without great pain and will fail to collapse if I push through that pain. Still, no one can tell me what is wrong with me or treat it. Who I was 11 years ago died. I’m not the same person I was back then. I experienced something like a missing person; a loved one. It took me a long time to let go and let it sink in that they were never coming back. Without that diagnosis, I have no finality. I don’t get to move on with my life. There is always this tiny string of hope that they can come back one day. Meanwhile, I continue to deteriorate. I can’t get help because a diagnosis is like a death certificate for my former self. On paper, I’m fine. I can barely function and require minor assistance, but I am not allowed to exist or get aid. I am massively sleep deprived from the chronic issues. A human body is a bit weird about lying down so much. I am quite likely to die young from complications, chronic physical stress, or homelessness. A diagnosis, even one that tells me my timeline would be really nice to have. I am left guessing instead.
All of that said, medicine is nowhere near as advanced as the media would have you believe. All you can do is make the best of the hand you’re dealt, but don’t stop living the best version of yourself and defying the statistics. Averages are just that; there are lots of exceptions.
The best things that have help me were the ideas: do not worry about anything you cannot change, and ignore anyone that speaks of hedonism in a negative light as a sadistic troll of a human being. Live the best life and take every opportunity. Write your last chapter well and live epically, when you are ready.
Ok…so what’s the perspective then? What happened after you survived? Whats the advice?
The whole comment is a spoiler block you can expand
First off, holy shit that fuckin sucks mate. I hate to hear it and hope that the initial shock wears off soon stuff. I love you
I’ve seen a few people talk about setting up their personal self hosted stuff with triggers for after they die to send the login info to whomever, which is on my radar due to a family history of early onset dementia/Alzheimer’s.
I watched my father deal with his dad, and now we’re trying to help him deal with his own situation, and I guess I’m hoping my kids are learning good lessons because I already feel like my memory is slipping like crazy even though I’m not even 40 yet.
I want to record videos like I’ve seen on movies/tv for life lessons that they’re too young to hear all the context for, I want to try and impart any bits of advice in an easily consumable and revisit-able format, for them to still let their kids or grandkids hear my voice and see me talk to them
When your mind has settled on how exactly you feel about this, certainly let your family know, when comfortable.
Sorry I don’t have better advice.
But we’re here to be any kind of sounding board you may need
Plan for the worst, hope for the best. A classmate in middleschool had a condition, i can’t remember what, but he wasn’t expected to live past 25. He’s 38 now. You, and your doctor don’t know what the future holds. Make the best of what you can, and keep up to date on experimental treatments.
You should talk to somebody about this, maybe a therapist, or close friend.
Also, for what its worth, this diagnosis isn’t an automatic death sentence. It’s a single study your doctor is referring too(which frankly isn’t a lot to go on) that found people in the study died 14 years after diagnosis of this disease.
You could live another 25-30 years with treatment. Nobody knows what the end will be.
They told my mom that she had 5 years left to live 25 years ago. They do make mistakes, and people do prove to be exceptions.
A friend’s mom has polycythemia. She’s in her 60s and has a relatively normal life. She has to take meds and has several docs that she sees - so she moved to a city with better medical access. She’s had a few bleeding episodes that required her to be briefly hospitalized, but her day to day is good. If you’re under 60 when diagnosed, you can be looking at 25 years rather than 15. That’s a long time for new treatments to become available.
Statistically people get 30000 days give or take a few thousand. Sometimes its a lot less. It’s our nature to make plans for our future but none of us is promised a tomorrow. All any of us know is that we have today. It sucks to get news like that just like it would suck to have a fatal heart attack at 40 or be hit by a drunk driver at 20 or be the unlucky victim of whatever tragedy. I lost a cousin when he was 9. Fair is not a property of the universe. Spending the time you are here fretting over knowing it’s going to end is pointless.
Practical steps. Talk to more doctors. Sure there are treatments to give you a chance at the longer time range. Talk to a therapist. Most of us get to ease into a mid-life crisis. You get to do the speedrun. Don’t put more importance the things you hoped to have in the nebulous future than the things you have today.
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.
My father had it. With his medication, he lasted (with good quality of life) until something else got him. What I’d like to point out though, is what “20 years” means in țhis context. That means it came from a study, right? Some people in that study lived less than that, some more. How old is that study then? Or more specifically, how old are the diagnoses and treatments of the people in that study?
Even if that’s very recent study, that means that at least some of the group started their treatment in the 90s or earlier. You’ll have more modern treatments based on what’s been learned since then, before even considering what will be learned during the long course of time you’ll have this. There’s more hope than you’re allowing yourself here.
Wow I can only imagine how terrifying it feels! You must have a supportive atmosphere with your closest family at least, you can’t go over it alone! If the situation allows it, don’t deny them the truth.
