Just giagnosed 3 days ago.
Posted , 9 users are following.
Am a female of 68 yr old
Am very anxious and have many questions
WANT TO SPEAK with others with this disordrr
0 likes, 10 replies
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Notes on Just giagnosed 3 days ago.
Zapamania christine02490
Posted
We're here. Ask your questions and you'll get an answer. Z
angela_o..o christine02490
Posted
ellen68007 christine02490
Posted
Ellen
pannej christine02490
Posted
Hi
I'm here also,with support !
Clicker christine02490
Posted
Hi Christine, I'm 72 female and was diagnosed last October and at first it is such a shock but it does wear off over time. I have found that once I saw my haemotologist and understood a bit more then I felt more confident. All the information I have seen suggests that this condition does not usually affect our life expectancy. Whilst it is not curable it is often possible to safely maintain the person. I take low dose aspirin since diagnosis and was already on a low dose of blood pressure pills. I continue to exercise regularly and do everything I have done before this diagnosis. The terrible early days of fear have gone and I hope that will be your experience over the next few months. It's a massive shock to the system but that does wear off ...... honestly.
angela_o..o Clicker
Posted
Hello Clicker,
I'm 66, living in England and was diagnosed early in 2016.
I am on aspirin and venesections and have been from the start. My consultants pester me constantly to go onto Hydroxy purely because I am over 65, it seems, but also because I refuse to fall into their scheme of standard treatment.
Are you in UK? How have you managed to stay on aspirin and off Hydroxy? I want to know how you have managed to beat the system. I want to know the magic words you say that will make them leave you alone.
peter98873 angela_o..o
Posted
Hi Angela,
Seems like you are not walking the fells after all. Hope you are well.
Can I suggest that as Christine seems to have received a very late in life diagnosis the opinion appears to be that the treatment required by her will never need to be what is required by younger mortals.
Heard on the radio today that we've suffered the coldest summer for 35 yrs.
Best wishes. Peter.
angela_o..o peter98873
Posted
Hello Peter,
Yes, it's cold here too. I went for a little toddle today and found a field full of field mushrooms. That, for me, is autumn.
peter98873 christine02490
Posted
Well, you have found this forum, so I will suggest you start by looking on the right hand bottom of this page under the heading Polycythemia Vera where you will find much about this PV disorder. I am sure many of your questions will be covered here and afterwards if you have anything more you need to know just post your queries onto the forum where I am sure these will receive sympathetic responses from people who suffer the same ailment. It can be a long learning curve so take your time, there is much you need to know i am sure. Best of luck.
Peter.
Clicker christine02490
Posted
Hi Christineyes I live in north of England but the drug you are mentioning has never been suggested to me. I am in good health and its 6 months since I needed a v enesection but I expect to need one next month. It's important you remain informed but in control I think.