Great Things come in Small Packages.... - British Liver Trust

British Liver Trust

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Great Things come in Small Packages....

Chelle_ profile image
19 Replies

Now is this really true? My liver is shrinking....this is clearly not a good thing as Hep has said my liver has less cells to do the job it needs. It is what it is really, it's still working quite well (I'm not dead yet)...

However I have been suffering headaches and have been referred to neurologist...they are going to get me in for a head CT scan, check for clots/bleeding etc...now I am more concerned that they aren't going to find a brain!! ha ha

Apart from that I am still just plodding along, he did mention a while back that they are changing the UKELD tables in January, you will have the standard on which shows the 'normal' liver failures and then a second that shows those like me that although we look quite well, our bloods doing ok and liver functioning quite well we still require a transplant...apparently this will help people like me....so my liver has 22 tumours on it and is suffering from not getting food enriched blood, hence it suffocating almost and bleeding on my stomach...anyone else heard this from there Dr's?

Hope none of you got blown away in the wind! :-)

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Chelle_ profile image
Chelle_
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19 Replies
Millie09 profile image
Millie09

Hi chelle , I must say I admire your humour and positivity hun. I do know that the liver can either shrink or enlarge but that's about it .I do know my liver is as stiff as a board lol , that's according to my hepetologist at qe after my fibroscan .

I'm sorry to hear yet again more problems on the horizon for you .you are in safe hands and with a good team at the hospital .I had my meld score and ukeld score back in May .I must say it really works out strange to me .apparently I am ukeld high enough for being on a transplant list but my meld score is only 7 . Mind you things have deteriorated since May so will see what they say in November

Hope all is not too bad news chelle , you have to cope with enough as it is . Sending you my best wishes as always . Linda 😊.. I have hospital Monday for pelvis x Ray due to being diagnosed with stage T 2_5. osteopenia in my hip .bloody painful it is and mobility is now restricted . Happy days !! Xx

Chelle_ profile image
Chelle_ in reply toMillie09

Linda, I had a melt down Monday night - those are the days I stay away from social networks. I'm not worried at all thought the CT scan on my head - I don't think they are going to find any issues, I think it's more to do with my glasses, or at least I hope.

I am positive because I know that there are people that are far worse off than me...and doesn't do me good to be all mopey and sad.

I hope things are good for you in November and on Monday and you find a way of dealing with things.

Millie09 profile image
Millie09 in reply toChelle_

Hi chelle , yes I can understand how you feel to a certain extent as we are all at different stages yet going through the same so to speak .I am never on social media , because It has really wound me up In the past do I keep off it now .

I do hope it's just your glasses chelle , I myself think you have enough going on . It's the same with me .I had a 3 hour interview with Manchester university who are doing a blog and video for people with or had alcohol problems and now have liver disease . I was asked how i felt when I was told I had end stage cirrhosis .. I just said it was a shock but considering I have been living with it for just over 9 years I was sort of expecting it .I too do not worry .What's the point , we can't change anything apart from taking as much care as we can .

Hope all goes well for you

I'm keeping all crossed Monday I have no fractures as it's bloody painful .xx

Gaynorlowson profile image
Gaynorlowson

I don't really understand all theses scores etc nobody ever told me mine and I never asked lol I do hope you get a new liver soon and keep up your optimistic attitude until then. 😊 Even now if I get any symptoms of anything I always think it's my new liver or medication I'm taking but it usually turns out to be something I would get anyway like everybody else xxx good luck 🤞 X

Hi

Hope you are all feeling s little better. I've got Nash with fibrosis but seem to be feeling worse and worse. Going to the drs this morning as I'm in so much pain. Foggy brain , forgetting everything, hope it's not he. Please take care. Lots of love Lynne xxxx

Chelle_ profile image
Chelle_ in reply to

Hi Lynne,

Don't panic, if it is HE then they can provide medications and tackle it from that angle. Don't worry, sometimes our bodies are battling other things like general colds, tiredness, infections that we don't know is going on and that can be an enhancer to other issues we already have. It might be nothing. Let me know what goes on!

Take care xx

in reply toChelle_

Thank you so much. I'm at the drs now, so watch this space!!!! How are you this morning? Xxxx

Chelle_ profile image
Chelle_ in reply to

I'm ok, cold but ok. I'm not back to the hospital until next week which is a bonus I suppose, even if it is for endoscopy.

Good Luck!

in reply toChelle_

Thank you. Endoscopies are horrible aren't they? Last time they gave me ketamine or something like that, best sleep I've had in ages, I only half woke up once, it was great!!!! Xxxx

Chelle_ profile image
Chelle_ in reply to

They aren't the nicest no. I do just let myself get taken by the sedation. I think this is about number 20 in the last 4 years and I wouldn't mind if I never had another one again! xx

in reply toChelle_

You've certainly had your fair share!!! Xxxx

in reply to

Hi

My Dr has increased my morphine, I've got to go back on Friday to let them know how I'm doing . How are you today? Xxxx

Chelle_ profile image
Chelle_ in reply to

Well I hope you start to feel better soon. X

in reply toChelle_

Thank you so much, you are very kind. As soon as I ear it hurts around my liver where the capsule us xxxx

Miche49uk profile image
Miche49uk in reply to

I hope you feel better soon too Lynne xxxx

Miche49uk profile image
Miche49uk in reply to

Hiya Lynne I don't have a lot of pain other than endo stuff but foggy brain, seriously awful memory, forget heaps of things but there are a million things it could be.. hormones, lack of enough fluid, anxiety, shall we throw a dart? I haven't had HE so I can't possibly comment but I think mine could be meds related or one of the above because at 49 and female that has to be factored in, I hope you are ok, must be hard not to worry and I know you don't get a lot of sleep too which might exacerbate things.. take care xxxx

in reply toMiche49uk

Hi

Thank you so much everyone for your kind words. My Dr has increased my morphine, though when I looked I'm already on that dose!!! Seeing him Friday, he said if you feel funny relating to your meds, go to a and e as it could be fatal!!! Really cheered me up!!! Please take care. Lots of love Lynne xxxx

Miche49uk profile image
Miche49uk in reply to

Oh great!!!! Poor you Lynne xxxx

in reply toMiche49uk

Thank you to everyone for all your support xxxx

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