ProfBaw said:

lung disease

Yeah, My lung keeps getting infected, I already have NAFLD, so don't drink, and yeah been told to drink at minimum of 2 litres of water a day to help avoid clots. Thank you for the reply ProfBaw! - does make me feel a bit more settled

Hello there and thanks for the post

I am sorry to hear you are currently undergoing some tests and are awaiting to be seen by a blood doctor (known as a haematologist).

I think you need to try and take things one step at a time for now and try not to over think anything until you have all the facts given by the doctors involved in your care.

No one here can say for sure what this is but from what you say the nurse has told you have polycythaemia (also called erythrocytosis), which means high levels of red blood cells have been detected. There can be many reasons for this other than cancer that you can read about on the NHS webpages.

Polycythaemia Vera is a particular sub type of polycythemia that is classed as a MyeloProliferent Neoplasm disorder (MPN), which are a group of rare types of blood cancer. MPN's are usually chronic ( meaning life long disorders) but when detected, monitored and treated can be well controlled.

Please try not to worry or jump to any conclusions for now, the symptoms you have are also linked to the increase in red blood cells, but the haematologist is likely to want to run some more blood test to find out the definite cause for your high levels.

I hope everything turns out okay for you.

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Best wishes,

Naomi

Hi Naomi,

Yeah I've had a x-ray and bloods and come back on notes I have polycythemia. The haematologist requested the bloods and x-ray.

Yeah, am not that worried currently. Just wanted to sort of know what changes I need to make other than drinking lots of water. I've had 6 blood tests 4 high Redblood cells and my blood test a few days ago was back to nearly normal

The gold standard test for PV, and most MPN's is a bone marrow sample. I had mine done via my hip bone. As the nurse said, there are other causes for this condition. It's why it's broken down into 2 types, primary (PV) and secondary. I was initially told i had PV because, like you, a number of my blood tests came back repeatedly high. Those blood tests are still not definitive answers. Another thing that can point to it being a MPN is having something called a JAK-2 mutation. This is often seen in people with MPN's.

Do you know if you've ever been tested for that?

As for what more you can do, simply going with the same advice others with blood clotting problems get. Keep active, drink a lot and lay off the diuretics as much as possible until treatment begins if you do happen to need life long treatment. Do not begin to take things such as blood thinners (Aspirin etc) unless directed to by a doctor. Because doing so can cause issues on its own.

As i said in my initial post to you, if you do happen to have PV or something similar, do not go having yourself dead and buried. It's something people just live with. I went through this 15+ years ago, so treatments have probably advanced more since i last researched all this. Cancer is a scary word, and any person would jump to the worst case scenario, i did too. But fortunately, not all cancers are equal in that respect.