Essential thrombocythemia (ET)

Hi have been treated for just over 2 years for Essential thrombocythemia (ET). Taking hydracarbamide 11 tablets a week. 3 monthly checks had call this week platelets 398 but hemaglobin high. Have to have a pint of blood taken now then another call in 2 months. A bit worried about this I must admit.

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Hi @Christine welcome and I am so glad that you have found us.
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses for you.
I think anything that we do not understand or know why it is being done is scary.
The main thing is that you are part of our forum family now and that you look after yourself and keep posting as I look forward to hearing more about you.

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Thank you for your reply I now have my appointment for 3rd October. Has anyone had this type of thing done?

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Hello @Christine and welcome to this forum. It sounds like you might be having a venesection which is rather like a reverse blood transfusion where blood would be taken from you via a cannula in your arm. Sometimes this is done if your red blood cell count or haemoglobin levels are too high. I haven’t needed one myself but others on this forum have and might be able to share their experiences with you. Warm wishes Willow x

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Thank you for replying it is as you rightly say because my hemaglobin is to high first time this has happened in over 2 years when I started treatment.

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Hello @Christine
Welcome to the Forum, I do hope that others share their experiences with you.
I used to be one of the nurses in the day unit that did venesections on patients when their blood counts were too high.
It was one of my favourite tasks, as it meant I got to sit down and chat to the patient for 20 - 30 mins whilst I monitored them and their blood was taken off.
The patient has their blood pressure and pulse taken first, they lie on a bed/trolley for the whole time, then I put in a normal cannula (I.V needle, as if you were having some intravenous fluids or medicine) and then attach some tubing that has a small clear bag at the end, (which I would tuck out of sight). Most patients take about 15 - 20 mins to fill the small bag, and sadly this gets thrown away. Then you’ll have the cannula taken out, get given a drink and have your blood pressure taken again. If you feel okay, you can go home. For any patients having their first venesection we would recommend you don’t drive yourself home, just until you get used to them (if you need more in the future). The more you have, the thinner your blood and the quicker the venesections take. Just remember to drink plenty of fluids the day before and the day after, to stop any headaches.
I hope this reassures you in some way.
Best wishes, Heidi.

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Thank you so much for this it helps a lot to know what to expect. I have given blood once a long time ago. I would guess it is the same thing.

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It is exactly the same, except instead of someone else benefiting from your blood it gets thrown away, and there is no biscuits at the end! (this is an NHS cost saving policy! :wink: ) Take some snacks in your bag!
I am sure you’ll be well looked after and everything will be explained by the nurse when you go for your appointment. Easy to say, but try not to worry.
Take care. Heidi.

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Thank you so much. I will take snacks with me we are in west Wales with lots of cuts, but the staff are amazing. I will also take a husband for moral support.

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