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Frequent Venesections

Posted , 4 users are following.

ItchyChris
ItchyChris

I am one of the few PV sufferers who has been cured as a by-product of the cure of a much more serious disease.

The “cure” involved about two dozen full blood transfusions, about half as many platelet transfusions and more chemotherapy than you can shake a stick at!

The effect of the transfusions is that my iron load went through the roof and I am now back on venesections, which I had hoped were over and done with.

I was a little put out to discover that my protocol is one venesection immediately, another after four weeks and then every two weeks until further notice! It was actually “every fortnight”, but some readers will not understand that.

I once again envy people who can get away with a venesection ever three months or so.

ItchyChris

0 likes, 4 replies

4 Replies

  • peter98873
    peter98873 ItchyChris

    Posted

    Hello ItchyChris,

    Well you certainly have been through the paces, so to say.   It is unusual for people to be cured of PV except by stem-cell treatment but this is not guaranteed by any means as I think you already know.   This treatment has many restrictions before it will be administered so is very lightly used.   As you say, many people dwell on the fact of venesections but simply do not understand the full impact of other treatments one has to contend with.    I would like to mention that people taking chemotherapy need to be aware of being affected by neutropenic sepsis which comes as a possibility with this treatment.  It is a post chemotherapy complaint that affects patients at the conclusion of chemotherapy.  Anyone taking this treatment needs professional supervision as sepsis can arrive very

    quickly following this treatment being stopped or delayed.  It must not be ignored.  Best wishes for your future Chris.

    Peter.

    • ItchyChris
      ItchyChris peter98873

      Posted

      Peter98873

      Neutropenic Sepsis is indeed a very serious problem following chemotherapy.

      I myself had a neutropenic fever and had to rush myself into my local general hospital, the specialist one was just too far away at about forty miles. The were unprepared for such a self referral but were brilliant in that they isolated me, started an IV antibiotic and found a single bed room where I could be reverse barrier nursed as well as circumstances allowed. Fortunately there was no sepsis, just an undiagnosed infection and five days of my wife bringing in an evening meal as I was on a Clean Diet, the medical one not the fad one. Unfortunately there was no en-suite so things were a bit basic, but I could and did, live with it.

      I am now approaching the two year survival point and will be starting a revaccination program shortly, so the future looks (relatively) bright.

      ItchyChris

  • peter98873
    peter98873 ItchyChris

    Posted

    Hi Itchy Chris,

    Yes, I know just what you went through with Neutropenic Sepsis.  My experience was also identical to yours except that my GP was called to see me, realised all was not well, contacted the Haematology Consultant who arranged my immediate transfer to a private ward in the hospital where I remained for 12 days.  I now have to carry a hospital card showing my susceptibility to NS.  Very good to hear that you are progressing well,   If anyone deserves an accolade it must be you.   It has been a long haul I'd suggest.   Good wishes.

    Peter.

  • harrishill1
    harrishill1 ItchyChris

    Posted

    Hi ichychris. I was diagnosed with PV about 7 yrs ago. At first, then after after a few months was put on just meds with a venesection only if necessary. Nowdays I rarely need a venesection.  That is how it often goes with this disease. Of course, everyone has different symptoms, sounds like your condition started out very different from mine. However, lets hope you will eventually just need the meds as I do. I have been doing pretty well on Hydroxyurea. Best wishes, and  I hope you will fare well as I have. harrishill1 
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