are there any support groups for prv? I cant find any

For the last five years I have been suffering with painful feet, itching, hot flushes, sweats, migrains, blind spots etc. Had a million and one blood tests. But the past year has been bad. At the beginning of April I got stomach pains like never before, I couldn't walk, , screaming in agony, and d&v. Dr wouldnt see me. You have a tummy bug, no big deal. For four days I lay in my bed getting worse, begging for a dr to help me. My friend looked after my daughter as i wasnt able and he rang my husband to come home from his job in Cardiff. Whrn my husband got home late on the Thursday night I was a mess. Screaming and praying to die as the pain was so bad. It took him until seven the next morning to convince a dr to come and see me. Finally a dr came. Didn't want to get close to me and wouldnt examine me. Ws he was leaving blood started gushing from my back passage. My husband shouted him back yo look. Slowly he came upstairs. Shes having a miscarriage, I will get an ambulance he said. I knew it wasn't a miscarriage but he still wouldnt look at me. He sat outside till the ambulance came, the drivrr asked him what was wrong...dont know but its your problem now he said. 30 min later I was in Scarborough hospital, a scan and xray showed that most of my bowels had died indide me and my stomach and veins were full of blood clots. The surgen got straight to the point. I cannot save your baby as you are only 16weeks, but I can try and save you. With thay I was rushed into surgery. My husband was taken to a separate room and told that our baby had no chance of surviving and that ot was unlikely that he would see me again. Most of my bowels were removed and I was left with a stoma( two ends of the bowel Iin a bag on the outside of the stomach). I survived and so did my baby. A few days in intensive care then onto a high observation unit and it was time to reverse the stoma. Your baby is not likely to survive they said. I had the op and we both pulled through again. A few days later i was asked if I had ever heard of polycythaemia rubra vera. What? I had no idea what the drs were on about. Apparently every blood test i had over the last five years showed that I had this disease but it hadnt been acted on. I finally got out of hospital but developed an abscess in my wound so had to go backk under the knife. Im finally home and am on two injections of fragmin a day and umpteen pills. My baby is now 24 weeks and who knows what affect all the drugs will have on him when he is born. As soon as I have given birth i have to start treatment on my liver and maybe even another op. Im frightened. Everybody seems to dismiss prv because its 'not a real cancer'. The problems ive had over the last five years have left me lonely because im too tired to see my friends, im in pain all the time, and im only 33. Does it get easier with the treatment? Will I feel better? right now im in limbo. I feel broken and nobody else can understand how I feel. Has anyone else had this experience? Im so angry that I wasn't treat sooner and have been left to rot. I pray that treatment will ease the pain and tiredness. Im upset at the thought of my liver and spleen being made poorly. Ive read that the clots can get you in so many ways, will treatment make me better or just make it easier to live with? Please, if anyone at all is out there who is in my position or similar, get in touch. Perhaps we can support each other. Thanks for reading.

Beki x

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