Hi there, I discovered this great board trying to find answers to my own blood clots - hmm had a major scare but this board was reassuring - Thanx. My question today is for a friend who has just been diagnosed with polycythemia - he is only 33 years old with a young family and is petrified about the diagnosis. As one of the children would not leave doc rooms he and his wife were unable to get any answers apart from the diagnosis. He requires more tests and a plebotomy. He has read about leukemia and short life spans - very scared - could some-one PLEASE shed some light on what he can expect from the diagnosis of polycythemia. We are not even sure if it is PV or secondary polycythemia - but any info would be greatly appreciated. Thanking you in advance. Cindy

Hello; please check out this site, it is very informative. Good Luck!!!http://www.acor.org/mpd/PVFAQ.html#1

This is another site. It is a an article written by Dr. Jerry Spivak. It is much more technical than the other but may be helpful none the less....http://www.bloodjournal.org/cgi/content/full/100/13/4272#SEC5

:) Thanx so much for that - I'll head over there now and check it out - any info is better than none - thanx again.

Cindy

i've had Polycythemia Vera for about 2 years and had have about l0 phlebotomies. It sounds terribly scary when you first first find out. I have a deep vein thrombosis about 3 years ago and spent a week in the hospital. My first fear was that it might happen again. However, after the phlebotomies, my blood work is in a normal range and I only see the Doc every 6 months as opposed to every 3 months. I still have a CBC done every 3 months to monitor the progress. I'm careful not to sit too long, but get up and move about every so often. Or stretch my legs out, wiggle my feel, etc. to keep my blood circulating. Apparently it doesn't always lead to Leukemia. I would suggest that he talk with the Doc again when he can do it privately and have him address his fears. I still get a pang of anxiety every once in a while, but think I have come to terms with it. Especially since now I've been told I have Rheumatoid Arthritis. Another matter to think and worry about. Good luck to your friend. Maggie

Thanx Maggie, my friend jsut read your post and feels a little better (well not better but you know what I mean) already - but he hasn't seen doc yet - has an appointment Thursday - this time no kids just he and his very worried wife. We found the site 'carguy' posted of great insight as well. Must laugh though, my friend is petrified of needles and wants to know if they can "knock him out" to do the plebotomy....ahhh men. Thanx for responding, and Good Luck to you!!!

Please tell your friend he can look forward to a long life as long as he follows his doctor's orders. My mother was diagnosed with it at age 35 and just passed away last summer at the age of 72 from congestive heart failure. When she was diagnosed, very little was known about the disease except to have frequent phlebotomies. Over the past 10 years, they started her on medicine that allowed her to keep her counts in check. I cannot stress enough that he must continue to keep in touch with his doctor. My mom ended up in the hospital a number of times but she would put off calling the doctor until she had to be admitted to dissolve the clots. We finally moved her in with us 15 years ago and made sure she went to the doctor for her blood tests regularly. This made a world of difference. Good luck.

If you have the Polycythemia is anything actually wrong with the blood other than too many red-blood cells?

I did not see it listed on the Red Cross list of do-not-donate if you have these conditions.

After the Red Blood cell count goes back to normal, can you donate blood?

Gin

I don't have *** answer to that question. My phlebotomies are done at an oncologist/hematologist's infusion center. *** clinician says ***y cannot give this blood to use elsewhere but is destroyed. Seems a shame since I'm type A-. Maybe someone else has had o***r experiences. Or you could call a blood bank and inquire. Having Polycy***mia **** may be different from Polycy***mia from ano***r cause. I don't know. Maggie

Sorry, don't know why all *** *** occurred. I didn't type ***m. Maggie

Hi everyone Its been awhile since I posted but hope everyone is doing good.
I have my phlybots done at the community blood center. They do not keep my blood because it would be too costly to have to take out all the extra red blood cells. At least that is what I was told. I really hate that too it just seems such a waste and since I have to be there already.
Cindy tell your friend to do his research and to be prepared and ask questions of his doctor. Yes it is very scary and you can become really depressed if you let it get to you. But I agree staying busy is the key.
Now I have a question Ive been having some leg pain. How do you know if you have a deep vein clot. Have a call into the doctor but thought i would see what you guys had to say.
Take care Jammin Mom

Hi Jammin Mom - When I had a deep vein thrombosis my leg was reddened and really swollen and hard. There was no doubt that something was wrong. I came home from work on a Sat. at 3 PM and noticed it, but let it go that night. When I got up very early to get ready for work Sun. It was just terrible, so my daughter took me to the ER, where they did a doppler and sure enough something WAS definitely wrong a DVT. I was relieved actually that my leg had such outstanding symptoms and the blood clot didn't travel first. It was also painful after a while, not immediately, but very warm to the touch. I'm not sure everyone will have the same experience, but just wanted you to know what happened to me. Maggie

about donating the blood if you have PV, it depends on the country you are, in France or UK they cant accept it. last winter i was in holiday in Sri Lanka and i had 2 phlebotomy done at a private hospital, they were more that happy to do it as they would reuse the blood. nothing is wrong with the blod, the problem is in our bone marrow.
question: has anyone with PV experienced Gout? i had it on the last week on my hands, quite painfull, basically the same symptoms as DVT in the legs...

massimo (italian living in france)
http://www.chauffour.com

hi all,

last night i had my first injection of Interferon, none of the problems i was expecting... just a bit more tired that usual (but yesterday i did cut the grass so i might be tired anyway). i took a paracetamol just in case.
for the first month i have a dose a day, then will see it it's enough 3 per week. luckily the french health systems pays 100% for the cost ($920 per month!!!). is it the same in other countries?
from now i will have to have a blood thest every week and see if Interferon alone can keep my values down, or maybe i'll still need some phlebotomy just to help (i had 10 till now).
will keep you posted

ciao

massimo
chauffour gites
www.chauffour.com