Kidney Patient Guide

I have just reached about 12% function - suddenly lost 5% function and am feeling very ill. I had a gastric infection. I applied for DLA, got turned down, appealed and got turned down. I think my gp has now stopped pressurising me to go out to work as I just get bullied when I try. I've been of sick...

I asked about reactions to IV iron drips and was told they are very rare and when they happen they are extreme and leave a person very ill. I met a patient who had a bad reaction to it and he said he was in hospital for 2 days and felt like he was dying. If you have the same reaction, even if only m...

Hi there, Thanks for the replies. I have asked a private counsellor to attend the renal appointment with me. Its does seem to be quite sillly when I cancel an appointment and I just get given another one without being asked if I want it. I do hope that things improve in the future at least for other...

I thought I'd only feel the need for some kind of advocacy if I was mentally seniile. Howver I feel the need for some kind of representative. Kindly relatives etc don't always help. My sister came over 100miles to visit and see my GP with me but it resulted in unspoken empathy and support for my GP ...

I've just seen the horizon programme about being overweight and what research has shown over the last 30 years. Looks like slimming tablets are a bit dodgey. Also there is loads more research that needs to be done as there are loads of bio feedback hormone/enzyme pathways than can be used to develop...

HI Carol, I think being half well and half not well is diffuclt anyway but at stage 5 there is the complication of feelng on hold, waiting for a normality or new normality. In general I guess all humans live with uncertainty, its just in our faces at end stage renal failure. 'End Stage' and 'Failure...

I couldn't agree more about the strain on 'caring' family. I think what frightened me the most when my abusing husband was so plausible in appearing caring and the consultant assumed him to be caring. He was just fed up with me being depressed but in the mean time was seeing other women - he didn't ...

Sorry about tending to sound negative. I guess I just freak out sometimes. Maybe its the gastric bug and being virtually snow bound. Stuck indoors and idly watching the telly I came across Mckenna's 'I can make you slim'. I found he had some helpful tips though some of his instrructions about emotio...

Yes I love dickens too! Very intteresting that researchers can get some good guesses at to the cause of symptoms. Its interesting that the Tim in the story was so much appreciated by his family. I am sure the family warmth helped and appreciation of him helped to be positive. Children frequently do ...

Hi there - thanks for the reply. Well spotted re shyness and egos getting in the way of good medical practice as these can be on either the patient's side or the doctor's. I think the problem is with people about my age and perhaps non-confident young people that there have been so many years histor...

Fantastic thumps! Glad to hear it. However I would mention that the stages when I was mishandled were from stage 3 onwards and I had no idea I had the right to see a consultant, so kept seeing the registrar for pit stop appointments. The point at which I blew my top was when I was seen by an Asian R...

Hi Amanda, thanks for your reply. I think I have good evidence that we still tend to underestimate the need to control systolic blood pressure in the UK. This may be because of a cultural difficulty with admitting to emotional turmoil and stress - difficult to admit to in the workplace anyway. I thi...

Thanks for the good wishes. I'm not sure whether I will have RRT as I had such a rough time last time I was vulnerable. I don't think I can stand the clinical atmosphere of the renal unit - it makes me feel that there is likely to be further breaches of confidence, clinicalisation of me without actu...

By March this year it will be 4 years since I was told you will be on dialysis soon!. Just goes to show that medics have still got a long way to go before kidneys can be analysed down to enough details to predict how fast they will deteriorate. Either that or I've had an answer to prayer, though adm...

Sorry you are feeling so down. Do you have a sympathetic GP? It must be very difficult trying to support a renal patient - not knowing how much to say or whether to say anything and perhaps even as angry about the situation as much as your husband. I don't know how much support renal patient partner...