"My mums care"

My mum has stage 4 renal cell carcinoma. With bone mets and other signs of spread since the diagnosis 6 years ago. It had spread to her chest area and hip bone and now her one remaining kidney. In November she was admitted to the Royal Gwent hospital for Radio Ablation treatment to 3 new tumours in her kidney. The "care" she recived there was apalling. The treatment was done with care but her aftercare was severely lacking. She was malnourished and dehydrated upon her discharge and I read her notes while she was on the ward and they stated she was looking after herself and was moving about the ward. She had got up once for the toilet and went long periods without a drink or food as she was sleeping they took food away before she ate it and the nurses were not aware if she ate anything as they simply did not ask her. She was more like semi conscious than sleeping when I saw her. She attended a follow up appt that included a ct scan. They did not conduct any blood tests for kidney function before giving her the contrast dye injection and then informed her by letter the "results were satisfactory". What does that mean? Had the tumours shrunk? Disappeared or what? ? Since then she has been in hospital with a perforated bowel ( probably due to nearly 6 years of Pazopanib) which resulted in a radical small bowel removal and an ilestomy bag. During her hospital stay she has had severely high blood potassium levels both before and after the surgery. Is this purely due to kidney function? If so what level of kidney function does she have? The renal team were consulted during her stay on the coloretal ward of UHW and she was given IV fluids to get her electrolyte balance up to normal levels and given a calcium drink for the high blood pottasium levels but no further info from the renal team.

She was discharged a week ago but the stoma and district nurses were so concerned about some of her symptoms they ordered blood tests. Today after the results came back she was readmitted to hospital as an acute kidney failure patient with creatinine levels of 340. The admitting doctor said the renal team had put a fantastic care plan in place. All she has had from them was a letter for an outpatient appt for April. We only have her word for it yhat it's a fantastic care plan as no one from renal ever told my mum her level of kidney function or the symptoms to look for that would indicate she needed further help ie intense itching or hand and foot cramps. If not for my mum constantly complaining of these to the stoma and district nurse we would be none the wiser. The admitting doctor today was very dismissive of my concerns regarding my mums kidney function blaming the gastic surgeon for sending my mum home with an overactive stoma that has led to dehydration.

But told us they had to accept some level of kidney function compromise. During her hospital stay the only way her potassium and creatinine levels stayed below 250 were with iv fluids. So it was inevitable they would rise once she was home and told to avoid too much fluids as they were causing her to swell. I do understand her condition is complicated but at present we feel ill informed about her renal function and whether this current acute crisis is due to an overactive stoma or kidney failure. We need some answers.