Discussions By Condition: Blood conditions

polycythemia rubella vera

Posted In: Blood conditions 12 Replies
  • Posted By: Anonymous
  • November 16, 2006
  • 10:32 PM

my husband, aged 37, has been diagnosed with polycythemia about 2 years ago, seems to have every related complication. large spleen, portal vein to liver clogged and many, many more,no one has ever sat us down to discuss the seriousness of his condition, so i feel that we are in a constant state of denial about what is going on. need some answers, don't need sugar coating, anyone also suffering from this disease or has current info. most information i have found dates back to 1998. he got a genetic test to reconfirm, are my children likly to have the same disease. we have 3 young children

annaoife@yahoo.com



















* #2 *

11-09-2006, 11:30 PM

Reply Flag this Discussion

12 Replies:

  • My dad had polycythemia. We (his kids) were told that we should have liver tests, or at least advise our doctors, as this can be hereditary.I would get a doc who will TALK with you and not blow you off. This is a serious condition.l Dad had to be "bled" every month or so - his belly would get huge! I lost my Dad due to complications and other issues - his liver finally gave out. I don't know the other conditions he had (right off the top of my head). There was something he was taking meds for for about 15 years that eventually ruined his liver - I thought it had something to do with his blood so that is what brought me here to respond.Good luck with this. According to what I was reading just a couple minutes ago on the web, this is not fatal if treated properly.
    Anonymous 42789 Replies
    • January 4, 2007
    • 09:57 PM
    • 0
    Flag this Response
  • I feel that people with polycythemia vera don't get enough info about this condition. My aunt was diagnosed with it- she is usually very energetic and add spice to everyone's life. She feels that one can't be "killed by the diagnosis".Her attitude helps a lot. She is "taking care of herself", having her treatments and therapy, but she continues to live as normal as possible.I would recommend you reading the book "Never Be Sick Again", by Raymond Francis. He is from California. The book is packed with easy to read information of things that one can do on their own to improve the quality of their health and life. Everything in that book is backed with scientific research. This guy is mostly trying o end chronic disease- this really is not a business, he will give you free info.He has an article on turning on and turning off cancer- it might give you some hints on things that you guys might want to beware of.http://beyondhealth.com/articles/turningcancer.htmHe also have a radio show and health meetings (free), in which he gives advise.
    Anonymous 42789 Replies
    • January 4, 2007
    • 10:10 PM
    • 0
    Flag this Response
  • Hello, my father was first diagnosed with polycythemia about 35 years ago, he had regular transfusions, and my sister and I were both tested as nothing much known then about polycythemia. we were both advised that if we did contract it, we would be able to have a complete blood transfusion, we were teenagers and asked about our children getting it, again we were told the same thing, a complete transfusion. My sisters children are now 28 and 25, mine are 18 and 13, all children were tested soon after birth and were clear, while I was a regular blood donor, my blood was tested every few years - nothing. My father died in 1986 but from a heart attack, not the polycythemia.
    Anonymous 42789 Replies
    • January 12, 2007
    • 09:29 PM
    • 0
    Flag this Response
  • I have polycythemia vera. My hematologist finally put me on Hydroxyurea, 500 mg, once a day. My RBC count went from 1260 to 300 in a couple of months. The change has been pretty dramatic for me. I just wasn't able to function - feeling like my blood wasn't circlulating. Now I have energy - physically and mentally. I do have to be careful not to be around people after they've had the flu shot or any type of shot where a live virus is used, and I have to discuss with him before dental surgery, etc. due to bleeding concern.My best to you and your husband.
    Anonymous 42789 Replies
    • January 13, 2007
    • 01:06 AM
    • 0
    Flag this Response
  • Check this out: http://groups.yahoo.com/group/polycythemia_vera/I am a new member.
    Anonymous 42789 Replies Flag this Response
  • I am lost here and i just dont no what is going to happen ?
    Anonymous 42789 Replies
    • November 7, 2007
    • 08:11 PM
    • 0
    Flag this Response
  • hi i was diagnosed with prv september 2008. i have been through being bled.and my latest visit to the hospital i was told i need to take hydroxyurea 500mg once a day. he told me to read the leaflet carefully about the side effects as he didnt have the time to go through it with me.dont know what to do,am seeing gp.can any one tell me if they have had side effects whilst taking hydroxurea.
    Anonymous 42789 Replies Flag this Response
  • hi,i was diagnosed 5 yrs ago,with pv.i too was scared and confused.i was bled fora few weeks,then put on hydroxyurea .two one day,three the next,so on and so on.500 mg.as far as side effects.i'm still tired a lot.bruise easily,other than that,still live a good normal life.i wish you well in your journey.WE WILL SURVIVE.
    Anonymous 42789 Replies Flag this Response
  • This is what I am really afraid of happening to me.. heart attack is one of a fatal thing that polycythemia can bring because of blood clots anywhere in the main arteries of one's body who has this.. I am really confused and scared now of what I've researched and read in the internet about this dreadful desease. It's only prayers that make me feel stronger and face it with care
    Anonymous 42789 Replies
    • November 17, 2009
    • 06:01 AM
    • 0
    Flag this Response
  • This is what I am really afraid of happening to me.. heart attack is one of a fatal thing that polycythemia can bring because of blood clots anywhere in the main arteries of one's body who has this.. I am really confused and scared now of what I've researched and read in the internet about this dreadful desease. It's only prayers that make me feel stronger and face it with careReply: Get a life - prayer and fear are not going to help you. What will help you is getting accurate informatiopn and then figuring out how to live with this. I am 66 years old and have beeing living with PV for 5 years. Get to a good Hematologist who knows something about this and he will set you up on a programme of Phlobotomies and medication to control you heamoglobin and, red blood count and hematocrit. All of these things will greatly reduce the possibility of death by stoke etc. If like me you are fully symptomatic, start reading the Patient Advocacy sites - there are two good ones - learning how to control the symptoms. The hardest thing that you will have to do is to learn how to live with PV without letting it define your life.Best of luck.I can be reached at howardkerbel@sympatico.ca. Don't hesitate to contact me if you need some information on available resources.Howard Kerbel
    Anonymous 42789 Replies
    • November 19, 2009
    • 05:55 PM
    • 0
    Flag this Response
  • You continue to pray to help you cope with Polycythemia, my husband was diagnosed with this condition in his 40's, it is difficult to get help and support, and at time when he has felt tierd and unwell it has only been our faith in God that has helped us through.I will pray for you also x
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • I have polycythemia vera. My hematologist finally put me on Hydroxyurea, 500 mg, once a day. My RBC count went from 1260 to 300 in a couple of months. The change has been pretty dramatic for me. I just wasn't able to function - feeling like my blood wasn't circlulating. Now I have energy - physically and mentally. I do have to be careful not to be around people after they've had the flu shot or any type of shot where a live virus is used, and I have to discuss with him before dental surgery, etc. due to bleeding concern.My best to you and your husband.Did you have any side effects from this drug. I am to start taking it, but the side effects seem terrible. thank you for any information
    Anonymous 42789 Replies
    • October 25, 2010
    • 00:52 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.