Please help info on terminal kidney failure

jella

Hi Everyone, I'm really hoping someone can help. My aunt who is 49 years old and has a learning disability developed kidney/ end-stage renal failure last summer. She also has chronic heart failure and because of this is not strong enough for dialysis or a transplant. The only pain relief that can be perscribed for her is 500mg of paracetemol. Her consultant in the hospital has discharged her from his care to our GP, but the GP has been of no help. He just tells us she is a great warrior and there is no more he can do for her. She stopped eating last week and asks to use the toilet about every 5mins 24/7. She may only pass urine one time out of every 5 attempts and spends her days in bed, she's too weak to even sit on the armchair now. We know there is no cure and all we can hope for is to keep her as comfortable as possible. I've tried contacting the Irish Kidney Association but they do not have any information on this condition. If anybody has been through this or has any information at all on this I'd really appreciate it. Is it normal that she would feel the urgency to urinate so often and be unable to pass urine? Thanks in advance we are at our wits end between the lack of information and also with physically trying to care for her.

spurious

Is there a nurse assigned to her?
Is it not possible to catheterise (sp?) her, if only for her comfort?

jella

The health service has really let us down. She cannot avail of a carer as she is not over 65 or doesn't have a primary sensory or physical disability. The public health nurse called today and was more interested in discussing how her christmas went than my aunts health. It took her nearly 2 months to fill in a form so we could get incontinence pads for my aunt. From what we've read up on catheterisation as long as she is passing over 400mls per day she does'nt need one and presently she's passing about 1l. Also it is a very painful experience having it inserted (i've seen it being done previously) and we have been told it would be too dangerous given her condition to sedate her for it. She would still have the urge to go and would not understand that she could not use the commode as she had a catheter.

caz34

Jella,

I think you should try your local hospice service. They help anyone with a terminal diagnosis not just those with cancer. Check out the hospice foundation website and chose hospice care from the top and then services and how to access them from the left. You will require a referral from your GP or the hospital which I am sure that they would give you.

Best of Luck

Happy121

caz34 wrote: »

Jella,

I think you should try your local hospice service. They help anyone with a terminal diagnosis not just those with cancer. Check out the hospice foundation website and chose hospice care from the top and then services and how to access them from the left. You will require a referral from your GP or the hospital which I am sure that they would give you.

Best of Luck

This is great advice. The hospice are amazing. They can help. They were fantastic with my Mum when she passed.