life expectancy for polycythemia

When you say they die within years, how long are we talking about? some people say they've been living with it for 20plus years. I was diagnosed three weeks ago and totally have to come to terms with it. right now I am totally upset and nervous.

i just found out yesterday that i had polycythemia. looking for all the information i can find. devastated at this post. i'm 46.someone please explain "die wiithin years of diagnosis"

Hi Connie, I too just recently found out I have PCV. Pretty bummed about it as it is for life. Phlebotomies every week for now and Hydrea, 500 mg daily. As long as it is under control, u have nothing to worry about. I know two people very well who have it - one for 30 years, the other for 20 and they are definitely no where near ready to die. They will live, a

s we will till a ripe old age. (as long as you listen to your doctor and do what he says. Trouble is we read much to much on this Internet. Some of the information is so old, and yes, many years ago they didn't know what to do to keep our blood at a proper level. Keep positive, but first if you have to feel sad or angry or scared or all of the above, do not hold it in, let it out so that you can accept your blood disorder as a fact and move on. You'll be okay. I'm still getting there. Let me know now you're doing. Good Luck!!!!!!!!!

I have also just been diagnosed with polycythemia and was worried about the life expectancy. Reading your comment has made me feel so much better and a lot more positive about the future. I am taking Hydroxycarbamide 1000mg daily and last time I went to the hospital my blood levels were fine. Hope you are doing well.

im now 37 but have had polycythemia for over 6 years, this is the first time ive checked out what the disorder actualy is! my doctors never mentioned a short life span, just keep taking ur meds and get your blood checked occasionaly, eat healthily, stop smoking (know its hard) and enjoy life my friend. all the best

I was diagnosed with PV 2 1/2 years ago at age 67. My treatment is still simply having blood taken every 3 months plus low-dose aspirin. I had necessary surgery soon after my diagnosis, and was monitored carefully, but had no blood clot. I think the info about shortened life expectancy is coming from a study (reported on the MVN website for blood disorders) of less than 400 people over ten years, showing mainly cardiovascular/thrombotic events as cause of death within ten years. The hematologist who treats me says not to worry--that I'm doing all the right things to have a normal life, and I trust her.  My biggest problem with PV is near-constant itching that antihistamines don't help, and I don't want to take steroids. I also have some anemia, but the doctor doesn't want me to supplement with iron, and I know that chronic anemia eventually affects one's organs. I try to keep up with clinical trials, and there's a new drug that shows promise for improving the blood aspects of PV as well as the itching.  I'm hoping it will be approved in the U.S.

 

I have not just one incurable, chronic disease, but four, so I've learned to live with each of them and their various challenges. PV is the most dangerous, but if I'm compliant with my doctor's instructions and try to live a healthy life, that's the best I can do. My parents and all but one of my grandparents lived to their mid-to-late 80s and even 90s, but if I don't make it that long, I want to wring all the real "living in the moment" joy possible from all of my days on the planet. That's a better way to live than worrying!

 

Best wishes to each of you on this forum!  

 

Jaye

Hi, I was diagnosed 15 months ago, at first I was worried as I did not know what it was about. Since then I visit the haematology day unit say every six weeks my blood levels are checked regulary I take 500 mg of Hydrea tablets every other day which keeps my platelets down and phlebotomies maybe every 8 weeks to keep my haemacrit levels down. Once they get the latter levels o/k I wont have to go so many times possibly every 3/4 months. So I understand why you are nervous and upset at this moment but rest assured you will be o/k, well looked after and as long as you keep to the program they give you, you will be fine as I am! Live life as normal as I do. I'm still playing Tennis, Skiing partying enjoying life and I'm 62 I will be around for a long long time as you will be. Best of luck.

Bless you for respoding in such a positive way. You, & other PV people on the net are a real tonic!! My loved one is awaiting tests for PV, & I have worried myself silly having read some of the medical reports. However, there is no substitute for real people with real stories to tell, & I cannot tell you how relieved I am to now have some positive news at last. I will tell my friend to do exactly what the doc says, & that we can still look forward to a good & happy life together.

Hi I have had polycythemia For around 15 years, I don't believe anything Doctors say they are lazy give you any answer they see fit.Use your computer and make your own way

Hi there I too have just been diagnosed with polycythemia Vera. Haven’t got all my tests back as yet but after reading all your forums it gives me peace of mind knowing that there are a lot of people out there like me.
Maggie

Connie you could live a regular life span if you keep you blood counts in check and are in good health other then the PV

I'm 72 years old, have had Polycythemia for around 18 years and have only recently retired. Over the time it has been treated mainly with periodic therapeutic bleeding and hydroxyurea. 2 years ago the hydroxyurea was ditched in favour of Ruxolitinib with immediate positive results in terms of well being.
What I can tell you is that have lived a fairly normal life, involved in endurance sports and half marathons, which I won several of in my early 60's. It's not all doom and gloom, far from it. I'm feeling the pinch a bit now but, what the hell, none of us get out of this alive anyway!

Thank You...I'm doing the same thing as well.

I just saw it on my test results and the doc didnt even mention that is was serious? so I am totally confused as to why they didnt communicate the seriousness?