Hi everyone, I was diagnosed with Polycythaemia vera (PV) in February this year but I never really got 100% from the Haematology team with this and they suggested some cross over. They are quite vague about it when I talk to them and blind us with science. My white blood cell is low, high platelets and rbc is high. I’ve had. 3 venesections so far and my haematocrit is at an acceptable level so not had venesection for a while. Sorry, long story short, I have started to get an upset tummy at all sorts of times in the day but doesn’t prevent me from eating. I really can’t bear the thought of breakfast anymore, not early anyway as it just doesn’t appeal to me. So, I am going to start having something later morning when I get to work.
My question really is, does anyone else get this kind of full feeling, bit grumbly tummy and not really enjoying food, but kind of better when you do? Sorry, so confused with all this. I was examined back in May and my spleen is ok. Thank you all. Sorry for rambling on. X
It so hard to understand the medical jargon isn’t it and what this really means. Even more frustrating when you come out from an appointment not having answer to your questions or concerns.
I know there will be forum members who will be able to share their experiences which I hope will help.
It’s really important that you inform your team of any changes or different symptoms if you haven’t already. Have you got an appointment soon or a clinical nurse specialist you could contact to talk about it?
And remember, nobody rambles on here. This is one place you can say how it really is for you.
Hya Nichola,
Yes, I have an appointment with Consultant on 5th December. I see a different Doctor each time and they all have different opinions on everything so it gets confusing.
Sometimes I feel I’m getting on ok and I got those other times I feel I’m falling apart. I have a supportive family and friends tho which is great.
Thank you for listening means a lot, Liz x
means a lot, Liz x