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I didn't know I had anything wrong with me or my bloods until I went to the pharmacy 1 month after a knee replacement when I was given iron tablets but why I had no clue the a year later after the next knee replacement. And something flagged up and I was ask just before I was administered anacetic do I know if I have issues with me blood which I replied not to my knowledge. After leaving hospital I had an appointment to see hematology doctor whom told me I had this p/v e/s . Apart from regular… read more
And welcome to the NHS, a perfectly capable institution that firmly believes YOU don't need to know. Frustrating to say the least.
Fear not, everything you need to know and want to know is on this site, along with many people that want to help.
So, what's going on?
Your DNA has gone a bit wonky, its mutated and this happens. DNA isn't as resilient as you think, it's constantly getting damaged and constantly getting repaired, sometimes the damage is too much and the repair impossible, thats when things change.
With the ET your producing too many platelets, the off switch is broken, it can't be cured (yet) but can be managed. Not sure of the mechanics of the PV because I don't have it so I havn't researched it, yet!
I'll leave it there and be lead by your own questions, but try not to worry, your not going to die, not today anyway, there's one fella on here with a 35 year old diagnosis!
Fire away.
I would be one of the people with a 35 year old MPN diagnosis. It used to be ET but progressed to PV about 12 years ago. I have lived a good life while managing the MPN and at age 70 ptan to continue to do so.
Educated and assertive patients receive higher quality care. Passive patients do not. You have the right to access everything in your medical record. Suggest you review your medical history to get the complete picture.
It is very important to consult with a MPN Specialist, nit just a regular hematologist. MPNs are rare diseases and most doctors have little experience with them. There are several excellent MPN care enters in the UK. if you are near London, Guys and St. Thomas is one of the best.
Meanwhile, here are some resources to get you started. See the MyMPNteam site.
https://www.mpnvoice.org.uk/
https://mpnadvocacy.com/
These webinars are excellent. Start with MPN Molecular Biology.
https://mpninfo.org/conferences/2025-conference...
Wishing you all the best.
Thanks for chiming in Steve.
It sounds like this has been a really confusing and unsettling journey — finding out about a blood condition almost by accident, and still feeling like nobody has properly explained what's happening. That's incredibly frustrating, and you're absolutely not alone in feeling this way.
It sounds like "p/v e/s" may refer to Show Full Answer
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