Discussions By Condition: Blood conditions

polycythemia rubella vera

Posted In: Blood conditions 2 Replies
  • Posted By: Anonymous
  • November 16, 2006
  • 10:35 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


* #2 *

11-09-2006, 11:30 PM

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  • My sister in law was diagnosed with p.vera also, about 15 years ago. She has a rare form of it that has now turned into leukemia. She has been through some very hard times and has been close to death alot. She doen't have a very good prognosis. She is in the later stages. She doesn't respond to blood thinners and so she gets alot of clots in various parts of her body. She is in alot of pain around the clock, but again, her's is an extreme case of it. Ironically, I am being tested for the same thing. I have had a fever for about 2 months now and all my blood counts are elevated and I meet all the ctiteria. I was absolutely in shock when the Dr. started explaining what is wrong with me. What are the odds of this happening twice in 1 family and we aren't even blood related! They feel I'm in the early stages. I hope testing will prove thier diagnosis wrong, expecially since I have seen the suffering my sisiter in law is experiencing. They told me, with early detection and treatment, I can lead a fairly normal life. I am nervous. They told me it can be hereditary, but not always. This does not mean your children will get it! IT is very rare. Don't plan on it, but they should always get blood work done yearly just in case. I read on the Mayo clinic site that they are doing alot of research on this disease and are having great success in their patients they are treating. They have a phone number you can call to get an appt. I plan on doing this once I get/ if I get a positive diagnosis. You must be proactive. Don't wait to seek good treatment out of the ordinary. Most Drs. don't know much about this disease and sometimes they are guessing- as we have found out with my sisiter in law. She has waited too long for bone marrow transplant and now is not healthy enough for any more surgeries. She has had many with her blood clotting issues. Do what you can do now while you are healthy enough to do it, even just to travel is an impossibility for my sister in law. My advise is to not just settle for your doctors advise, but to seek many opinions out of your area. There is no certain set treatment for this condition, short of thinning the blood and getting rid of the excess blood. Each doctor will handle it a bit different. There is hope for quality of life, but you need to find someone who will help you past this denial stage and will give you the facts, hard as they may be to hear, so you can jump on this now and do some other things and face reality. so you can rest knowing you are doing all you can. Educate yourselves! Things change all the time. Don't know if you have heard this, but years ago when my sister was diagnosed, the average life expectancy for one with this disease was 10-15 years. My doctor said it is now at 23 years, so things are improving. I feel that within 23 years, the way technology is going, changing and improving, we may be the ones that get to experience a cure before our time is up! How long ago was your husband diagnosed and what kind of symptoms was he having to bring them to this diagnosis? How long has it taken for him to get to the point that his other organs were effected? How did he know these things started happening? Don't forget an important thing- I believe that none of us will go a minute before God has planned for us. Before we were even born, He knows our time to be born and our time to die. He gave us brains to use in the meantime and if we do use them and educate ourselves and use that information, He will help us in all in our trying times and He will comfort us and guide us to the right treatment. NOthing happens by accident. Find your purpose in life and do it. That brings much happiness. Not to offend anyone, but no one is guaranteed one day on this Earth. We might as well be thankful for each day we wake up and try to enjoy it and our family and friends and live each day to it's fullest, no matter how bad we feel. God is our strength. Good luck and I hope you find your answers.
    Anonymous 42789 Replies
    • February 28, 2007
    • 05:55 PM
    • 0
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  • My husband was diagnosed with PVera at age 45 and is now 62. For 16 years he lived very well on hydrea and phlebotomies. For the past year he has had complications. His Hgb would go down to 6 and he has received many transfusions. He was put on Procrit to bring up the red blood count. As a result his spleen grew to be 10.1 lbs and he had it removed in January along with two more baby spleens. Since then his blood picture has not been good. His platelets and white blood cells are very high yet his red blood count and hemoglobin are low. The dr. wants to put him on Remlivid, a drug used successfully for multiple myeloma patients. It acts directly on platelets. He has not made a decision and is putting up with ulcers in his mouth that won't go away (he has palliative medicine for this) and edema of feet. ankles and sometimes calves. He takes edecrin, a water pill. for this. We are just going day by day, but he'll have to make a decision soon. Remlived is chemo.
    Anonymous 42789 Replies Flag this Response
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