husband has polycythemia
Posted , 4 users are following.
husband ok with it, on hydrea but i am terrified as everything i read says will die early from this
0 likes, 5 replies
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Notes on husband has polycythemia
Guest
Posted
There are many things you can read on the internet, lots are useful and some can worry you, but I have done quite a bit of research so far and my family have spoken to others in the medical profession along with a doctor friend who's husband also has it. He has had it for 20 years and is fine, and he is in his 60's.
I am a 35 year old female who has just been diagnosed and still undergoing tests and my first venesection is Thursday. I am glad I finally get to find out why I have been feeling so unwell for at least the last 3 years.
I hope your husband is getting all the help he needs. Just post on here if you want some more information or to share any concerns!
All the best!
Guest
Posted
He will not join support club tho and gets cross when i look on internet which usually scares me to death. Been married 35 years and don't want to be parted yet!!
annashadow
Posted
john_59578
Posted
I was diagnosed with polycythemia a week ago. I'm 70. I immediately started to investigate the disease.
A friend's father has had it for 9 years. He does nothing about it! He is 90 years old.
Venesection and aspirin have eliminated all my symptoms. I don't expect to die of the disease.
robert95239 Guest
Posted
I was diagnosed with PV in 2005 just before my son was born. I am 45 male. The only symptom I had before diagnosed were an unusual neck and headache. After several blood checkups and finally bone marrow biopsy I ended up with diagnose of PV. At the very beginning I could not cope with the fact that something like this had happened to me but after a while I came to terms with it and realized that I had to start accepting my enemy :-)
During the first 3 years I had regular venesection (phlebotomy). In 2008 my doctor decided to start the treatment with Hydroxycarbamide 500ml and within nearly 6 yrs the dose has increased from 1 tabl/day to 3 tabl/day. I also take aspirin daily. In the meantime I had some itchy chest skin symptoms but disappeared after some time. At the time I feel very well (a bit of red face symptom) and still pretty powerful (play tennis on the daily basis), however I have some concerns as everybody else affected with PV and wonder how long my body will accept the treatment. I have been looking for a specialised doctor in PV (in the UK) to get a second opinion. Besides I have a lovely wife and now already 9 yrs old bright boy whom I am going to make the most of our life with. I am very grateful to God that I can still enjoy my life. My life’s motto is “IT’S NOT OVER TILL IT’S OVER”. You have to stay positive as long as possible and appreciate the bright sides of your life’s in order to cope with your emotions. Chin up ! Abraham Lincoln said “In the end, it's not the years in your life that count. It's the life in your years”
I wish you both all the best.