Newly diagnosed PV after stroke.

Are the giving you an IV during the venesections?  That is an awful lot of venesections in a short period of time, though I understand why they feel the need to get your numbers down quickly.  I would imagine that you won't have to have blood removed nearly that often after the initial venesections. 

I would recommend staying as hydrated as you can throughout the process.  My doctors tell me to drink a lot of water the day before and the day of a venesection.

Hi  thanks for the reply yes the doctors on the day say I should drink beforehand and afterwards it’s just during the procedure because my blood is so thick and take so long to come out which has caused what I would view as a drop in blood pressure. Last time I went the nurse said my blood was looking better.  So I should  assume that soon they will reduce the blood letting down to what ever keeps it at the correct level . other symptoms I forgot to mention was I feel  tired but perhaps that’s because of the blood loss and the body having to make up that .   And backache perhaps that is a symptom of PV .

Colin

It sounds like you are having a really tough time but it also looks like the venesections are working well for you and they will eventually reduce in frequency. I'm not surprised you are feeling tired! Be kind to yourself and take what pampering you can get. I think it's generally recommended to drink lots of water at all times not just around the time of venesections. My haemotologist recommended 2 litres a day but that includes tea and juice he said. Good luck with this, its scarey stuff. I was diagnosed a year ago and am older than you at 72 but it does get a bit easier to cope with over time. I do a lot of walking, jogging and generally anything that increases my sense of well being. You will feel more "normal" over time and when your results improve.

It sounds like you are having a really tough time but it also looks like the venesections are working well for you and they will eventually reduce in frequency. I'm not surprised you are feeling tired! Be kind to yourself and take what pampering you can get. I think it's generally recommended to drink lots of water at all times not just around the time of venesections. My haemotologist recommended 2 litres a day but that includes tea and juice he said. Good luck with this, its scarey stuff. I was diagnosed a year ago and am older than you at 72 but it does get a bit easier to cope with over time. I do a lot of walking, jogging and generally anything that increases my sense of well being. You will feel more "normal" over time and when your results improve.

Hi niloc47: I was 65 and had just retired when diagnosed with PV. I was put on two capsules of Hydroxy per day, and hadn't had a pneumonia shot. I got pneumonia right away. The Hydroxy lowers the immune system, so make sure you get pneumonia and flu shots. I was very sick with pneumonia and was in hospital. As your meds begin to work, you will eventually not need the removal of blood. You could still work, but I know it's hard to work when you have to be going for bloodletting so often at first. I am now almost 76, and feeling fine on the meds. However, I am also on allopurinol for gout, which sometimes comes with PV. The meds flush a lot of vitamins out of my body. I walked all my life, and had to stop because of leg cramps caused by lack of magnesium. I am trying a very strong magnesium called cramp Relief. I hope it gets rid of leg cramps so I can walk the dogs again. Best of luck with treatments.

harrishill

 

You may well know by now that PV is a very variable disorder and affects people differently.  Your treatment will always be viewed with this in mind and be specifically directed towards your own circumstances by the doctors.  For this reason treatments also vary between patients.  Your treatments may well change over a period of time and be similar to what some others receive but each patient is dealt with on an individual basis for there can be no one treatment fits all approach.  I would suggest that you always discuss things with your haematologist and be attentive to some of the very sound advice you receive from other sufferers using this forum, many of whom have dealt with their PV over many tears.  I hope your difficulties will soon be resolved.