PCV and no spleen

Hello everyone ! This is my first time to post!

My Dad, Uncle, Aunt, cousins all have been diagnosed with Polycythemia Vera. I also am at the high end of the threshold with a high haematocrit level (36 year old female) but am having no treatment for it. My Dad often gets very tired with it. I have suffered from fatigue ever since I can remember. My Dad has to have blood taken off which always makes him exhausted. I was wondering what lifestyle changes and or natural remedies do people recommend for this condition? e.g. I have read about kiwis being very beneficial and reducing alcohol intake. There is a lot of advice on the Internet, but was wondering what things have worked for you? Please share!!

My Dad also has no spleen which makes him very vulnerable to infections so he has to be careful and is on daily antibiotics. I am worried about his levels of friendly bacteria. I have seen other people on here with no spleen and wonder if they are also taking daily antibiotics and if so do you also take pro-biotics to replace the frienedly bacteria? - what dosage and for how long? e.g. 20 billions active cultures etc.

Just as a side-note, the lack of knowledge/understanding from our GP has been disappointing. Are your GPs helpful/knowledgable on PCV? We had to struggle for a long time just to get him to consent to a consultation with a MPD specialist because of the "lack of funds".

Thank you in advance!

1 Reply

oldestnewest
  • Hi,

    I have PV dx 2009, when I had a portal vein thrombosis and had to have my spleen removed, amongst other things. I took antibiotics for about two years but eventually stopped as I was suffering from almost continuous thrush. I've been fine ever since, I have a flu jab every year. Currently I'm on hydroxycarbamide and anagrelide and don't have venesections. Hope this helps.

    Nicky

You may also like...