Never Ending Journey!

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'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

27 Replies

  • Wow Chelle... I hope things get much better for you xx

  • Thanks Matt

  • Hi chelle, just read your post hun.. Well I am totally baffled by all this , so I can imagine you are too .

    So basically your similar to me, my liver function tests are perfect! Yet I have f4 end stage fibrosis and mild hepatic encephalopathy on and bloody itching. I'm off to see my dr in an hour as I have been waiting for an MRI scan to be done at a different hospital and my liver dr at QE was suppose to have written and told my gp.

    So am I right in saying, yes you have liver cancer but it's the spleen giving you grief? I would have thought having liver cancer they would make you priority on tx list , but then I don't really know much on tx list procedure .I have a gastroscopy next Friday 🤔🤔..

    Is this the same as an endoscopy?? .

    Hope things pick up chelle. Keep positive hun xx

  • So no, my LFT show that there is decline, always show that there is decline, but they don't show the extent of the decline. I also do have cancer, but I have Blood Cancer not Liver. I have lesions on my liver started with 14 but now 3.5 years later have 21 they think.

    Endoscopy is the same more or less the same as your procedure, I will however have varicies that are bleeding all banded - I have them banded every 3 months. Where my portal Vein is blocked the blood that's meant to feel my liver cant get through so tries to go another way but ends up on my stomach. They have to band this before I bleed out too much...

    Good luck with your MRI scan and your appointment with your doctor.

  • Oh i see, sorry chelle, I do get muddled at times.

    Oh i misread and thought you had liver cancer 😒..

    I have had one endoscopy done and that was in 2008 !! I have never ever been cared for .I kept plodding on thinking all was fab due to being discharged by my gastroenterologist at a different hospital. Bet it must make you wonder at whst degree the decline is.

    At the end of the day at least your being taken care of and they are keeping a good watch on you. Thanks chelle, I'll make sure I get all my questions answered lol .take care xx

  • How did your appointment go the other day/ x

  • Hi chelle, yes it went ok thank you, he has given me antihistamines to take for the itching. I wanted to have the questrian powder that jojocrack uses but he had never heard of it? He had refered me 9n 25th of May as requested by my liver consultant for further nerve tests at neurolpgy and mri scan. Hope your ok chelle, did you manage to sort out the clothing issues? Xx

  • Oh you just have to be different don't you? 😜 You'll be having a tantrum on the floor in the middle of tescos next. Lol

    God you don't half go through the mill. See I struggle with the whole UKELD thing. I'm a 58 and yet minus the exhaustion and a few aches and pains oh and looking like a minion I feel and look fine. Goes to show the outside doesn't necessarily portray the inside and vice versa.

    I'm back up at kings next week for a bladder ultrasound and hep meeting.

    Funny thing with all this is we are all different, all present differently, all I know is it's an offal disease. 🤡

  • Hi,

    You've been through so much, it doesn't seem fair. I really hope they sort you out very soon.

    Lots of love

    Lynne xxxx

  • It's all part and parcel Lynne. My time will come xx

  • I know. I think you cope so well xxxx

  • Hi chelle your just as bloody complicated as moi lol 😁 hang on in there they will get you sorted, your definitely on the home stretch even though it won't feel like it to you at the moment. This time next year you will be feeling completely different xxx 😘

  • Thank you. He did say this time next year I will be well on the road to recovery - just keeping my fingers crossed. xx

  • Hope things get better for u xx

  • Dear Chelle, I also have NASH Cirrhosis and gallstones, and also currently have portal vein thrombosis probably for the last year, how long did it take to go away for you? It's a gruelling journey so far, have been taken off warfarin because of internal bleeding from somewhere and became very anaemic, they are trying to find out where at the moment. To top it off my boss dismissed me for coming to the hospital too much and for my work rate (supposedly) decreasing but that's another story. I too was at King's yesterday. Good luck with everything, from my experience so far you are in good hands at King's.

  • Contact a disability discrimination specialist - contact Acas as firing you for that is illegal and you should be entitled to compensation

    Rita x

  • Thank you for your reply Rita, it is in hand but more complicated than I thought, however. it is at early conciliation stage currently, but is adding to the stress, which I guess doesn't help with blood clots. I also feel brain dead not working and having a routine and purpose.

    Best wishes to everyone on this site, and especially to Chelle.

  • Hi, the PVT hasn't gone, my vein is close to collapsing, the clot that is there is bigger than when it was first found. I am on meds to try and aid the hypertension. I hope you get yourself sorted with work, sounds like an unfair dismissal to me!

  • Did they ever tell you the clot would go away, that the body usually absorbs it over time? Were you on warfarin for it? I am currently going through process to find out where my stomach is bleeding when I was put on the warfarin? We probably pass each other in the corridors at King's and don't realise it!

  • Your probably right, there are lots of people here that I have possibly spoke too and not seen. I have something called, Myeloproliforative Neoplasm - Polycynthymia Ruba Vera, this means that my blood creates blood clots, so as much as I am on warfarin and have been for nearly 4 years and beta blockers for 3 years, the blood clot; part dissolves and more appears, the latest MRI I had on Monday showed it was still a significant size and I am still bleeding because of it, endoscopies are being performed every 3 months...I have banding regular. 29 so far.

  • I'm sorry, I have nothing to say that will make things better apart from agreeing that we don't know what even the short term future brings, perhaps even a cure,

    What I can do is include you on some healing circles (Christian and Pagan) to hopefully help and send support,

    I hope you feel better quickly and require no further 'fixed

    Rita x

  • Thank you Rita x

  • Pps must be awful with no support on here 😂😂😂

  • virtual hugs

    I truly hope you can see the light at the end of the tunnel, take care

  • Lots of hugs, kisses and strength coming your way xxx Emma

  • Well hell sorry to hear that , I guess being home is the best news. I hope they can keep you comfortable. I always tell people it's not as easy as it looks or sounds , it's just hard to do unique all the time . Good luck

    dld 🤠

  • Haven't been on for a while but big love good karma and I hope you get what you need quite amazing lady still working love bri .xx

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