any advice?: hi I have a severely... - British Liver Trust

British Liver Trust

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any advice?

11 months ago•13 Replies

hi I have a severely Decompensated Liver my consultant has practically left me to my own devices, I have organised 2 weekly bloods to be with GP, so at I can keep an eye out for things. This week my bloods show I have Acute Kidney Injury. My Consaltant has not been in touch she never returns calls, my GP says it’s out of his depth, I have no one to go to about this on the bloods results it say’s refer to Renal team. But with no one looking after me how can I do this? I read it up on the NHS web site and says it needs immediate attention. But no one seems bothered, should I be worried!? Any advise will be appreciated btw I’m not even on a transplant list

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Harriet-sarah

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13 Replies

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Millie0911 months ago

Hi Harriet-Sarah. I'm sorry to hear your still having issues , have you tried changing over your drs ? Maybe report your current one if they are not doing a duty of care , I did that a few years ago now as the Dr I was with was totally useless! Have you tried calling the liver nurses here on forum ? Maybe they can shed some light on your problems or point you in the right direction.

I'm sorry I'm..not much help , but I do hope you find the help you need.. try not to worry .

My best wishes

Linda x

Aotea201211 months ago

Go immediately to A&E. I hate to advise this as it shouldn’t be necessary as you should be having care from your GP/ consultant and with it appropriate referrals. Acute Kidney injury is potentially very serious and could lead to all sorts of complications. You need medical attention and this is a way of getting it.

Shep66611 months ago

Sorry to read about your distress and worries. I have to agree with some others here - a trip to A&E would be my port of call re "acute kidney injury". It is not the nicest of routes into the NHS but in my experience it is far better than trying to micro manage your Doc and any appointments/tests etc at hospital. Any time I see acute - I sort of think "immediate".

Good luck and I hope you can reolve this ASAP.

RugbyMama11 months ago

Agree with others regarding A&E, anything to do with kidneys needs to be taken very seriously.

With regard to consultant, have you spoken to the PALS department at the hospital? They can help liaise on your behalf with the consultant to ensure you're getting the care you need.

Porcupine_Tree11 months ago

PALs and 111

BritishLiverTrust8ModeratorBritish Liver Trust11 months ago

Dear Harriet-Sarah

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

Mango5cm11 months ago

hi Harriet - I’m so sorry to hear how difficult everything is for you. . Last year my son was in a similar situation . He has decompensated cirrhosis and gets a cute kidney damage .Joe consultant left and no one was appointed so Stephen was getting worse with no appointments and no help . I wrote to his GP almost pleading for a referral to another local hospital where I know they have liver consultants . Thankfully they accepted him and now he sees two brilliant doctors - one from Freemans hospital in Newcastle and they both have a plan in place . The first time in almost two year his illness is being treated seriously with care and compassion . If there is another hospital near you try and get transferred . I hope you have some family and friends to give you support . Like others have said - go to A&E . Thin king of you Carol xx

Harriet-sarah11 months ago

thanks all I’ve just phoned GP he told me not to worry about it, so I phoned the Liver Trust explaining my situation and she had the same attitude of what do you want me to do about it! I said well, where do I go from here she sounded disinterested and said speak to my GP, I told her already I’d done that, and she’s like well I don’t know what you want me to do, I’m just where do I go from here. It felt like another person who couldn’t be bothered to help I said you sound just like all the others and burst into tears and put the phone down on her . So, yeah thanks a lot Liver Trust for nothing

BritishLiverTrust1PartnerBritish Liver Trust in reply to Harriet-sarah11 months ago

We’re sorry to read you feel this way as most callers to the helpline have very positive things to say about it. The helpline is long-established, and we work hard to provide a good service. Our nurses have strict medical boundaries on what they can speak about, which means they can’t always respond to some of the specific issues raised in calls.

We can see other forum members have since posted suggestions on other courses of action you may wish to consider.

Roy1955 in reply to BritishLiverTrust111 months ago

Also the liver trust can not arrange medical appointments or speed up NHS procedures.It's about advice and support and in no way a medical provider.

Harriet-sarah in reply to Roy195511 months ago

I want asking to provide me medical, I wanted advice on where to go about some information I have and found it unhelpful simple as, so whoever you are those are not the facts I was asking for

Ewife11 months ago

Hi! Do you have facility to access your results? I'm just wondering whether there's some wires crossed if professional advice has so far been not to worry.....or if you have misunderstood some of the results? Not belittling you, just sometimes doctors trot a load of figures and jargon out and can sometimes get a bit confusing at the time? I struggle to see why a GP would say not to worry about something that needs urgent medical care, unless it actually doesn't need urgent medical care if you know what I mean.Atb

Ewife

11 months ago

Are you referring to creatinine level blood tests, showing you are above the standard range? This usually has the descriptor AKI attached to the result?

Are you on water tablets such as Spironolactone or Furosemide? I find these cause my creatinine levels to spike?

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