Polycythemia vera

Hi everyone,

I would desperately love to hear some advice regarding my mum. Any messages would be greatly appreciated.

My mum started to feel really unwell in June. Headaches, shortness of breath, pain in her shoulder. She went to her GP who offered her physio for her shoulder and told my mum not to worry. My mum has been a nurse her entire life without any illness and so she and we knew something was wrong. She asked for bloods which took weeks and eventually after a bad morning she went to A&E. They told her she had had a ‘cardiac event’ which they suspected to be a heart attack, they kept her in over night and then sent her home the following evening after her troponin blood levels for her heart were okay. Ever since her GP has been so slow and she has felt more and more unwell, with a new rash spreading over her legs and arms. They sent her for many blood tests and eventually this week after everything coming back raised and her usually low blood pressure being extremely high, they have said they think she has Polycythemia vera.

She is still waiting to be referred to phomotmy and waiting for a full body MRI and ‘rapid’ chest scan which they said will get to her in January. I don’t know anything about this rare blood disorder/blood cancer type apart from what I have read online here but I am terrified. Is it normal for tests and treatment to take so long? I’m seeing my mum go downhill and I just want them to help her. Would anyone recommend going private? It’s not something any of us have ever done but I’m just desperate for them to treat her and for her to start feeling a bit better.

Thank you for reading and sorry if this seems dramatic, I know I don’t know much about this disorder, I just feel very scared.


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Hi Emma and great to know that you have found us and I certainly did not feel your post was dramatic…
Your scariness really naturally comes through from your post.
Firstly I attach the Blood Cancer UK information on Polycythaemia vera (PV) What is polycythaemia vera (PV) | Blood Cancer UK
I have never gone down the private medical route, obviously that would cost you, but the option is there.
You can also ask for an NHS second opinion, but I have no idea how long that might take.
I am afraid there is a lot of waiting for tests, results and appointments, which I find anxiety making…
The important thing is that if your mothers symptoms change, she gets other symptoms, or they get worse that she tells whoever she has seen for the tests or her specialist nurse, if she has one, or GP.
Perhaps suggest to your mother to write a list of questions she wants to ask and perhaps ask her if you can go with her to medical appointments as a support
If you would like to talk to the Blood Cancer UK support line their number is 0808 2080 888
Please look after yourselves and your mother is lucky to have such a caring daughter.
Please do keep posting how you are both getting on.

Hi Erica,

Thank you for your fast response! She has reported all of her changes to the GP including pictures of the rash for example which they said are either the blood vessels bleeding or infected but still the wait continues. She gets through the morning and then has terrible headaches and has to sleep which is unheard of from my mum. She’s always suffered being a bad sleeper. It’s just the waiting while watching someone get worse which seems illogical to me. Why does it take so long for them to treat?

I really have no idea where to start with going private but I’m scared the NHS are going to be too slow and she’s going to end up in hospital again.

Thank you for all of your advice. I think I will ask if I may go with her next appointment with her like you suggested.


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Hi Emma
I’ve been diagnosed since 2015 I’m under the nhs and all I can say is they’ve been fantastic it’s a bit daunting when you first get diagnosed but once ur mums bloods are under control life gets easier so give her my regards and any questions come back to me

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