Pvt

[Alina2017]

Hi everyone, I was diagnosed with PVT in Sept 2017 and have been on blood thinners since then, I don’t have any follow up appointments with anyone, just told that I will be ok as I’m on blood thinners but I don’t feel ok😢. Is there anyone with PVT that can help me ?

[Hidden]

Dear Alina,

You should certainly be having follow up to check the status of your PVT and whether your blood thinners are at the right level in your blood. You don't mention whether you are under the care of a specialist team following your diagnosis. You should contact your medical team and at the very least your GP if you are in UK or the equivalent if you are not, particularly as you are feeling unwell at the moment.

[Alina2017 in reply to Hidden]

Thank you no I’m not under the care of anyone and feel I have just been left on my own to get on with it - who should I be referred to ?

[ThreeSmiles]

Hi Alina

Welcome to our phenomenal phorum 😁.

So sorry to hear you have PVT. Trust5 is so right (as expected 😁👍). I can’t believe you aren’t being followed up. Admittedly I had cirrhosis but when they found a PVT that didn’t half accelerate the attention I got and the getting on the transplant list. But of course that was just my situation which may not bear any resemblance to yours so please don’t get worried!!

But do go and try and find out from your GP what the next step(s) are!

[Alina2017 in reply to ThreeSmiles]

They just tell me I’m on blood thinners so I will be ok. Just want some help even if I have to pay privately which I can afford 😢

[ThreeSmiles in reply to Alina2017]

Well if you can’t get a satisfactory response from your GP you could do that. But I would have thought GP would help if pressed.

[Alina2017 in reply to ThreeSmiles]

I am waiting for my doctor to ring me back x

[ThreeSmiles in reply to Alina2017]

Cool. Good luck 👍

[alfredthegreat]

Hi Alina and welcome. You should be having follow up appointments for your condition, if only for an eye to kept on your situation. You shouldn't have to consider having to pay privately for this. Contact your GP surgery and ask them what will happen next. They actually might have this in hand but have not thought to inform you. Sometimes there can be a lack of communication. All the very best. Alf

[Alina2017 in reply to alfredthegreat]

Thank you I am waiting for my doctor to ring. Xx

[Hidden]

Hello again,

Do let us know how you get on, you most definitely cannot be left with no follow up !

[Alina2017 in reply to Hidden]

The doctor will only refer me back to my blood specialist at hospital. Honestly I feel like giving up😢

[Hidden]

Good afternoon,

Do you know what the cause of your PVT is. It may be that the blood specialist team are the correct ones for you to see if the PVT is a result of a clotting disorder.

If you feel like talking to someone on our helpline, it is open until 14:45

0800 652 7330

[Alina2017 in reply to Hidden]

No they don’t know why it happened just put me on bleed thinners I will ring the helpline next week but thank you so much xx