Hello,
Does anyone have any experience of why anyone with Polycythemia Vera and Portal Vein Thrombosis, with a 22cm spleen would be offered a partial splenectomy, a spleen embolisation through the groin? Has anyone been through this?
My 48 year old brother went through this on 3rd April 2023 and it has nearly killed him. He remains in hospital. He developed necrosis, sepsis and ascites. The hospital he is in - a very famous London hospital - does not accept that PV is a blood cancer. He has no access to any clinical nurse specialist and never has done. He is just languishing in a bed. After weeks he now has a pic line. His arms were a mess.
My brother is very trusting and went along with this 3rd April procedure and didn't really understand it. He didn't want it. He was chased down to have it. He was well before it. He had had one spell of melaena, which he recovered from and some spells of going yellow due to dislodged stents, which would be dealt with, with a few days in hospital. But he took it in his strike and lived a relatively normal life. He was diagnosed with PV in April 2021.
He was working before the 3rd April 2023 procedure, but now he believes he is facing death because he has just been told that the residual spleen he has left 'isn't coping'. So he may have to have surgery but there are going to be huge complications, is what we have been told. He has stents too.
He has an external drain from his spleen area and puss comes out. There is necrotic tissue from congealed gunk stuck in his body. Something has happened to a capsule that we don't understand.
He is emaciated. Almost bed bound. No one ever talks about his PV with him. The procedure has been more harmful that the conditions he had beforehand.
If anyone has any experience of this, I'd love to hear.
Thank you,
De