77 year old-13% kidney function taken off dialysis by Consultant

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We have been told that she can come off dialysis which was 2 x per week with a 13% kidney function! The Consultant has said that this will be better and will be ok if controlled by her diet.  Immediately she has become breathless... does anyone know what will happen... is this ethical... it has been made out that this will be better for her and has not been her full decision... no discussion about the effects etc...just that she will have to go for regular blood tests in outpatients.  can anyone help please?  

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  • Posted

    Hi,

    That does sound alarming as you usually go on dialysis at 13% not get told to come off it.  Have they said its due to a medical reason or its not working? If your not happy I would raise the issue with hospital management as withdrawing treatment without reason or consent isn't usual practice.  If she has end stage renal failure (which at 13% she has) the kidneys don't get better or stay at that point they will get worse and will not remove the poisonous waste from her body.  The breathlessness may be due to a lack of iron or a low red blood count, but if she has fluid anywhere (face, hands or ankles) the breathlessness could be fluid building up on her lungs (I am not a doctor just end stage renal failure myself and its been a life long condition).  I would ask for a meeting with the consultant and have a nurse present, you take someone with you and ask for a full explaination and then take it from there.  Good Luck

    xx

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    • Posted

      Thank you helen for the time you have taken to reply. We have been told it is because she has been doing so well with her diet and on dialysis and that she might be able to manage better off dialysis.  Obviously reading up about this is a major concern as it has been put across to my relative as she is doing really well so is ok not to have dialysis. Very scary indeed, especially as she immediately got breathless, went to see her Doctor who said it would probably be asthma and gave her an inhaler.  We are contacting the Consultant and writing to him and the family Doctor so this is documented.  I really feel she is been sold a pup, as she is 77 and so with NHS cuts they are being quite brutal about who gets treatment.nas you said without dialysis she isn't going to get better. She has agreed to this as it has been sold to her...but at no point has she been told this will shorten her life. Watch this space...this isn't going to be handled quietly.
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  • Posted

    Hi,

    Good on you just because someone is of a certain age doen't mean to say they don't deserve treatment! I would ask the consultant for writen confirmation of the decision to remove dyalysis and also that no harm will come to her, I would ask for writen confirmation that the kidney function will not drop and I have to be blunt here there is no risk to her life.  I think if they are asked to confirm such things in writing they may back track, I would still complain down the official NHS route about the treatment so you have everything on record in case it is needed for whatever reason.  I would ask the question and also for confirmation in writing that end stage kidney failure can be controlled by diet alone (I think not as if this was the case I could try this wonderful diet and I would have to risk mine and my friends life having a transplant) ask them to show you evidence to back up their claims.  I am sorry I have never heard anything like this before

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  • Posted

    manon4321>Sunny8

    Absolutely agree this must be investigated properly and immediately.  This certainly has the feeling of trying to cut down on dialysis, especially after the government's move to give funding tom CCG's.  There may be a medical reason but this must be clarified with the patient and family.

    Good luck and keep us posted.

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  • Posted

    I am sorry to read of your anxieties. I have 11% kidney function and have commenced dialysis because I was symptomatic, not because of the level of function. Many people are a-symptomatic until function is down to 5% and do not need dialysis until then.

    With any form of dialysis there is a high risk of infection at the catheter site. Not everyone is careful enough to prevent this risk.

    Providing there is no diabetes, the blood pressure is not too high and there is no other predisposing health problem, a person can remain well with low kidney function providing the diet is right. Failing kidneys cannot handle high levels of potassium and phosphates so guidance and support from the nephrology dietitian is essential.

    All I would say is 'don't panic'. This has probably nothing to do with age, more to do with quality of life and not being attached to a machine for hours at a time, reducing infection risk and improving diet. It sounds to me as though you have not been given the full story by your mother - you really must find a professional in the Renal Unit to discuss this with.

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