Forgetful.....

[earthpixie]

It's probably been asked before but........in 2012 I spent over 4 months in hospital with decompensated Liver. All I remember is the liver biopsy and a sample of bone marrow being taken as to very low rbc. This was diagnosed as pure red blood aplasia on top of cirrhosis of the liver. That is all I remember. Have unfortunately had to change gp due to house move and new GP refused to give me flu vaccination. The question is should I ask to see my hospital records to find out bow severe my cirrhosis is and prognosis? I attend liver clinic twice a year for U/S and blood tests and when I ask consultant about my spell in hospital he says....the mind is a wonderful thing....

[Hidden]

Hello 😘😘😘 normally I pull be the one to say 'yes yes get them' but in your case - I am not sure that you need to xxx Drs cannot withold information anymore - and I would guess if you are being seen twice a year for bloods and ultrasound then they must be happy with that - any changes in results would initiate another appointment - perhaps make a appointment with new GP (a longer one) and ask them why you can't have flu jab ?? And ask them also what level your cirrhosis is at ??? 😘😘😘 I am only guessing by response given by your consultant - perhaps while you were in hospital with decompensated liver - you had a bit of 'HE' (oh bum have to write it in full !!!! Hepatic Encephalopathy) and what you thought was going on - wasn't actually what happened ??! Hard to get your head around when your brain is normal - but my Rob has told me loads of things that he thought had happened and they hadn't really ??? Just a thought due to his comment 'the mind is a wonderful thing' 😘😘😘😘😘 you are of course entitled to get your GP and hospital notes for a fee of up to £50 - but in this case it might just be paperwork that won't give an answer !!!!! Hope that helps and your feeling ok 😘😘😘😘😘😘

[earthpixie in reply to Hidden]

Thanks.....I have an endoscopy booked for February and if you request to see notes within 40 days of hospital visit its cheaper to see notes. I do know I wasn't expected to survive as have been reminded by specialist nurse and my mother.Consultant seems pleased with my progress. perhaps best thing to do would be to email the specialist nurse at hospital to find out what level cirrhosis is. Just dreading getting flu as won't be able to take anything other than low dose of paracetamol.....

[Hidden in reply to earthpixie]

Bless you 😘😘😘 I remember those days 😓😓 it's seems barbaric in this day and age that they haven't found a decent 'analgesic' that doesn't affect the liver 😧😧😧 not just for colds/flu - poor Rob had 'gall stones' and they gave him 1/2 dose of paracetamol !!!! Non liver patients would have full doses morphine 😂😂 so I don't blame you xxx I think you may find that anyone suffering with 'liver disease' (it doesn't specify what degree) is entitled to free flu jab !!!! So I would defo take that up with GP or ask specialist nurse to contact them and ask for it to be given to you xxxxxx ❤️❤️❤️

[earthpixie in reply to Hidden]

Will do....i am allowed codeine, but seems a bit extreme to use that for flu😄

[scottyboy40 in reply to earthpixie]

Hey...You are entitled to have the flu jab, as you know I am in similar position to you regarding cirrhosis, decompensated a couple years ago but now compensated,due to recovery and abstinence. I had mine 2 weeks ago. Maybe ring your specialist nurse and ask them to contact your gp,so there's no confusion.

Hope you get sorted. Xx

[earthpixie in reply to scottyboy40]

Thanks scottyboy40..... Will do, really not liking new GP.i do wonder if they have my notes at all😂 hope you're keeping well and managed the whole Xmas thing with alcohol everywhere....am convinced that if I did drink now I would throw up😄

[PCBnPBC]

on subject of HE ...copy and paste .. 'HE' (oh bum have to write it in full !!!! Hepatic Encephalopathy) I was up in Newcastle transplant area for a consultant visit last week, I said to Angie that I had not been in this area (for consultant visits) before..she replied, apart from about 15 times in 2014 !! ....and as for the trollies that went about the wards just post my TX (transplant) that "talked to me", some even sung songs !, one (on my way to an ultrasound on day 3) was chanting bad liver, bad liver to me, really freaked me out! the mind is weird, and even weirder still if HE is about!

[liveronmymind in reply to PCBnPBC]

'HE' (oh bum have to write it in full !!!! Hepatic Encephalopathy)

TX (transplant)

....... feels like being back in school!

it must have been the noise the trolleys make as they are wheeled along! maybe the wheels needed a bit of oiling - or are they hydraulic? they sound a bit like airport wheely things to me but probably sound weirder still when HE is about! ....... copy paste ....(oh bum you should have to written it in full !!!! Hepatic Encephalopathy)

[earthpixie in reply to liveronmymind]

Hahahaha😁.....was one lady admitted who was very nice by day..come the night screamed ice cubes being lobbed at her and doctors had barbed wire😆

[PCBnPBC in reply to liveronmymind]

wheels were fine I think, ears and brain needed the oil.....

[earthpixie in reply to PCBnPBC]

Yep.....strange things happen....like imagining being moved to another ward where ants were crawling all over floor....up walls😆

[earthpixie in reply to PCBnPBC]

Very very true.......😄

[PCBnPBC in reply to earthpixie]

I had rubber cobwebs, spiders and small insects crawling all over, people from my home town (220 miles away) on the ward discussing home topics, wife colluding with consultant to have me sectioned, totally believed the hospital was in fact my home, with a sort of time tunnel, which strangley I could not figure out, packed my bags as I believed I was in Beirut, in a war zone at a train station, and needed to get out fast, the nurses steered me back to my room, it went on and on, the talking trollies were a pleasant relief!! I was told those who had had bad HE were affected more strongly by pain meds, I refused pain meds as the hallucinations were so horrid.....pleased to report I am slightly better now happy days....

[earthpixie in reply to PCBnPBC]

Haha...but its good that you can look back and laugh😁😆

[PCBnPBC in reply to earthpixie]

Fantastic that we all can look look back and laugh! even my daughters (who did suffer horridly) are now able to do this, ..all part of a tapestry of our lives, enjoy!

[Hidden]

afternoon

De compensated is called end stage liver disease, although its appears you have pulled it back a little and gone back into compensated where the Liver can carry out its function at the moment. The problem with Cirrhosis is that it is progressive, its a disease process that ends with Liver failure.

I haven't seen you post the cause of your Cirrhosis, if you stop the cause you can at least slow down its progression. Many live for years with Cirrhosis, but at some stage a transplant may be an option.

[earthpixie in reply to Hidden]

Hi.yes at the time of my release from hospital a transplant was often discussed, but being told one drink could kill me has meant that I am extremely careful over my diet and teetotal Since admission to hospital.

[Hidden in reply to earthpixie]

So it was alcohol alone that was the cause? if that is the case then stopping alcohol will let the Liver recover somewhat, but alot of permanent damage has been done and will progress over time.

It might be time to start the process of transplantation or atleast discuss the matter with your Liver doctor. Tests such as the fibroscan are quick and painless and can give an accurate picture of how scarred the Liver is. But I think the immediate concern is your Liver function numbers and screening for cancer and checking for varices .

[earthpixie in reply to Hidden]

Have been teetotal for over three years and have a liver screen done every 6 months including the HCC test and otherwise in good health except the fatigue that accompanies liver disease and forgetfulness yet memory recall is excellent for my teenage years.....endoscopy booked, and as of yet no varices found. I never am told results of blood tests though so assume they are ok, but had a liver screen blood test last week for gp so will definitely ask for those results. So in some ways very lucky as Addenbrookes is my local hospital. I will ask in may (next appointment) about transplant but think I may not meet the criteria at present.so thanks Ralph 2014 as I really should enquire.

[Bolly]

Did the docs diagnose the cause of the aplasia and have you been treated? Is it possible the flu jab refusal is connected to the aplasia or treatment? Or perhaps in previous years you had a bad reaction and it's on the GP records? You look very young to have cirrhosis, what triggered the acute liver failure?

[earthpixie in reply to Bolly]

Thanks 😁....Am 45 and have been rather unlucky it seems.My ex partner was and still is an alcoholic.To make his drinking seem normal it made sense to him to involve me in his drinking. I never drank anywhere near the levels that he did but my liver biopsy revealed hepatitis and an ibuprofen overdose which seemed odd as I never used ibuprofen as well as cirrhosis. I had the flu jab at previous gps-they insisted on it.

[Inverness]

Meaning what? That its all in your mind. God they make me sick up there on there pedestals. Ask to see you records its your body. Hope all goes well. Karen. X

[earthpixie in reply to Inverness]

Thanks Karen....😁.....

[Inverness in reply to earthpixie]

Hi sorry didn't mean to get so annoyed. Also replyed on wrong post,

I'm at addenbrookes as well I'm under prof alexander and I always get my results. Hope all goes well. X

Sorry having bad day, all to much for me. X

[earthpixie]

Hi..am under Dr Allison and the specialist nurse is very good but I think the problem I have is with the new GP surgery. Last one was great, moved 2 miles and had to register with local gp. Its impossible to see a specific one unless you book well in advance which I try to do but whereas last GP would show me blood results this one doesn't. Did see Prof Alexander for a time while an inpatient and he was great😁

[scottyboy40]

Few of us at Addenbrookes eh!

[earthpixie in reply to scottyboy40]

So it appears...but was at clinic 12 a while back....and a lovely couple got talking to me....they drove from north wales twice a year for her 6 monthly post transplant checks...In their 60s, she went in for her blood to be taken....and he was choking back tears of pride......don't see that too often......