So yesterday I was back at Kings College, MRI scan and appointment with the Hepatologist. They have picked up a few new lesions on my liver, portal vein isn't blocked any more than it already was/is and my spleen is about 25cm or something....it's always been big but he is suspecting that this is the reason my liver is painful, my spleen is pushing against my tummy and my tummy pushes against my liver...
Anyway, what I came away from this appointment is that my liver as I may have explained to a few of you be fore is that, my liver is working well, considering. However when it stops working (because I have had a bleed) it's like a heart and stops almost completely, that's when I am back in hospital for a few weeks and they have to spend the time fixing it....his concern is that they don't know if they will be able to 'keep' fixing it.
My UKELD doesn't reflect the inabilities of my body and doesn't show how unwell I am, so as a point system goes it's not valid really for me, so although I am about 53/54 I should be up by the 60's. So my case is discussed every week, emphasising that my Liver Cirrhosis isn't text book, the Portal Vein Thrombosis isn't text book....I am not standard...this is all because of the blood cancer.
So apparently (don't quote me) but he said that come the new year there will be a divided system, that everyone will be separated on a list, to LFT that reflect liver failure and then one fore people like me that are ill enough for tx but LFT's aren't reflecting....Anyway that's a long way off and who knows what will happen between now and then.
I am meant to be back at work today, I am but working from home. Travelling and new information means my brain is whirring like a little blender and I had no sleep....also part and parcel of the sleep reversal I suppose.
Anyway, I hope those of you that can are out enjoying the sunshine (obviously covered in sun cream) and for those of you like me are drinking lots of tea and having a cheeky biscuit...
Much love to you all xx