Necrosing spleen

[DeKa]

Does anyone have any experience of having a spleen embolisation? If so, did their spleen carry on necrosis 5 months later? Has anyone had a drain for 5 months outputting necrosing puss?

How long were they in hospital for?

My bother has PV and portal vein thrombosis and was directed to have radical spleen procedures. He has been in hospital for months and has been told that his medium and long term outcomes are high risk because HE has to decide on high risk surgery now, but he can’t, has no information. PALS managed to force the hospital to do a referral to Guys because for all of these months he’s not been treated for PV. No haematologist has seen him since being hospitalised and he has no access to a CNS.

[hunter5582]

What you are describing does not sound like anything that should be expected. Is your brother still in the same hospital that has been providing such poor care?

[DeKa in reply to hunter5582]

Yes. He is in the same hospital. We are terrified. He is seeing Prof Harrison's team in 2 weeks by ambulance, or I will drive him myself. But we don't know whether anyone at Guy's can help him with the necrotic spleen, because he's been so damaged. We had to force the referral on the basis that he was no longer being treated for PV. So that is the basis for the referral, but he is a mess.

[hunter5582 in reply to DeKa]

Is he being transferred to Guys? I certainly hope so. The care that you describe at the current hospital sounds terrible.

[DeKa in reply to hunter5582]

No he isn't being transferred. But he needs to be transferred to somewhere where they can help him. We are waiting to see what they say at Guy's. He was strong as an ox before this spleen embolisation. I'd love him to be transferred somewhere else! Here's hoping that someone at Guy's has seen this barbarianism before and can help.

[hunter5582]

I would definitely insist on being transferred to Guys or somewhere else where he can receive the care he needs. Wishing you both all the best.

[Amethist]

This sounds dreadful!

Please help your brother get full copies ( paper) of all his medical records test results etc which he is entitled to. Do this asap, also any gp notes say of the last 5 or 10 yrs. You may need these, especially when you see a different doctor. Don’t expect these docs to be passed on through official channels. ( I have learned through caring for both my mum and dad that the NHS is a regional health service, not National and there is very little info sharing between doctors/hospitals)

Maybe take some legal advice too. Citizens Advice may have some useful info.

Perhaps these services can help:

You can contact your local HealthWatch team via healthwatch.co.uk or NHS Complaints Advocacy, VoiceAbility – voiceability.org

patients-association.org.uk

patients-association.org.uk...

maybe get your mp involved.

Wishing your brother a speedy recovery!

Good luck 🙏

[DeKa in reply to Amethist]

Yes, THANK YOU. I am hoping that Guy's have a miracle when we see them in a couple of weeks.

[Wyebird]

Oh not getting answers is horrid. I do hope guys can help. They are an amazing lot.