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primary polycthemia rubra vera

I was diagnosed some 18 months ago, having read all the articles i could, i found a few things, firstly how scared i became, the realisation i may only have days or months or years, sounds stupid but you just do not know.

The variant stories and mediacl information for the illness, how i would love to sit with others to discuss the outcomes or experiences, im now 43 and feel old age as we know it will not pay me a visit, some may find that great, the thought of being looked after by strangers in a care home, for me the expectations of at least living until im 80+ is a minimum.

Im now on Hydroxy and aspirin and various other tablets for the itching, this i have a theory on, i find intake of oxygen a help plus the release of blood, the instant they remove blood the itching stops for a day, the relief of taking a shower with no itching so so nice.

Oxygen i feel is the key, the blood taking oxygen around our system giving life to organs and the brain, i feel the signal in the brain has some thing to do with the itching, i do not know why or what but it eases such when the intake is increased?

Budd Chiari has be overted, the treatment of blood letting and aspirin has reduced what was a high or elevated billarubin count, i have had a count in the region of 120 for 13 years, this after what doctors thought was hepitias c where my count reached 598, it rapidly reduced during my treatment, they now are investigating this in relation to the budd, not a cure but certainly helps the risk.

Spleen is very enlarged, quite painful at times, swellings on my legs and marks appear, loss of hair seeping in, only a little, my liver is enlarged too, i have had this investigated via Jugular oscopy? there were signs of clots etc but fairly clear now, constant monitoring goes on.

To be honest the writing of this is simply a release as im quite scared, i have know idea why but i am, support is required but i must confess other than my girl friend i have none form my parents, tough is a great word to describe the daily events, the bloody itching, drives me mental, so intense.

Gavin

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