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End stage kidney failure - Carers UK Forum

End stage kidney failure

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Hi all!

I'm just looking for someone who can help me, my partner has recently been diagnosed with end stage kidney failure and i cant find a single forum or anything like that for some advice or support, if anyone has any experience with kidney failure and wouldn't mind giving me a message i'd would be so grateful. thanks :)
have PMd you
Hi Lauren,
Welcome to the forum, I hope you find it friendly and supportive. I'm not sure how many members have experience of caring for end stage kidney failure, however, many issues affecting carers and carees are common to many different caring situations.

Hi all, Sorry for jumping on your post Lauren. My dad has also been diagnosed with stage 5 CKD too. He has just had an appointment with the renal unit and because of other medical problems ( heart disease) dialysis is not an option. The doctor has recommended conservative management ??? If anyone out there could please explain exactly what it means. Is it another word for palliative care ? Any information will be appreciated . Thanks in advance x
Hi Elyse, I'm sorry to hear about your dad, it's fine I'm also wanting as much information as possible so if someone can help I'd be interested to know. Someone on here sent me a useful link, I'll sending to you it if you don't already have it you might find some information on there
Hi Elyse
Sorry to hear about your dad, my dad is still at stage 4 but also not suitable for dialyses. He is also being cared for by "conservative management". My own dad is nearly 90 and has a number of other significant health issues and leads a very restrictive lifestyle with poor mobility. He is not well enough to cope with a transplant and dialyses would really be just adding to his long list of medical requirements and be fairly unbearable for him. In cases like this the consultant will look at a patient's other health issues and weigh up whether there will be added qulaity to life by offering dialyses or whether it is too much for someone to handle and merely postponing the inevitable and causing them undue stress in the meanwhile. The conservative management will try to keep them as comfortable as possible with pain relief and perhaps tablets to help with water retention , and still treating UTIs but no transplant and no dialyses. If your dad is in the final stages have you discussed palliative care or hospices with the consultant?
Copy and paste the whole of the next line and put it into google search - a lot of info is available.
"renal failure" "conservative management"
My dad had CKD too. They kept a watchful eye taking bloods regularly. He was put under a consultant at Stage 4 but, being in his 90s by then, there was little to be done apart from meds etc. As things declined, he became weaker. I read up on as much as I could and realised that it was going to be the knock on effect to other organs that would eventually take him.
With the CKD diagnosis and knowing things were going downhill, my dad moved into a home where he could have 24/7 support. It proved the right thing to do for him and gave me time to be his daughter again. He was 93 when he passed away.

My niece, in her early 40s, went into end stage CKD from being a Type 2 diabetic. She went onto dialysis and was put on the kidney transplant list. She had a transplant a couple of months ago.
Thank you all for your replies. Juggler, my dad will be 87 this year and he too has very limited mobility. He has been in a care home since the new year as I was struggling to give him the care he needed. I felt so guilty at first but I now know it was for the best. He was quite shocked when the doctor diagnosed CKD, although his levels must of been dropping for a while. He's at 14 % at the moment. Some days he can be quite tired and he gets UTI's almost every other week. He did say that the food at the home didn't taste as good . Is that normal ? What symptoms should I expect as the disease progresses ? x
My mum used to have a really keen sense of taste and smell, we always said she was like a bloodhound. However, towards the end of her life, she said all food tasted the same, and she almost lost her sense of smell too,