End stage kidney failure

Posted , 6 users are following.

This may sound weird but I'm looking for information about what a persons goes through, physically, when they are about to die of kidney failure, as they tell me I am.

Since dead people are hard to communicate with, I was wondering if anyone here has had the experience of going through this with a friend or loved one.

I would like to know what, if any, pain is suffered and what physically happens to the body near death.

What changes are expected and if there is a time line to the process.

I know this may be a tough question for some people, and I apologize in advance, but it's important to me. No, I decided to NOT go through dialysis so no use bringing up the subject.

Thanks

0 likes, 6 replies

6 Replies

  • Posted

    Hi Steve, I know this is a grim topic but I understand where you're coming from, so I'll do my best to respond. The only experience I have is my own, I had kidney disease with gradually reduced kidney function, and at the point where I finally started dialysis my estimated kidney function ("EGFR") was a measly 6%, so I was starting to cross over into the death zone. I don't know what your EGFR is at this point so you may have already experienced what I'm about to describe:

    Breath smelling of ammonia

    Dramatic rise in leg cramps at night, in frequency, duration and strength (those were a bugger)

    Reduction in energy

    Cognitive fog

    Loss of appetite

    Swelling of legs as fluids build up (due to kidneys being unable to "keep up")

    Disturbed sleep

    Itching (buy body lotion)

    Fits of nausea

    ...and the kicker was an ice cold tingling / burning sensation that started in the feet and worked its way upward. It's hard to describe, it felt like I had liquid antifreeze for blood and it caused this tingling / cool burning-like sensation that was vaguely disgusting. As soon as I experience that it freaked me out and I started dialysis as quickly as I could. That was always the plan btw - to go on dialysis - but in hindsight I let my EGFR go to low (I was scared of the surgery).

    I don't know what it would be like to die from ESRD; I do recall my nephrologist saying it was a painless way to go. I've read a few accounts and it seems that various symptoms keep piling up until the end so I'm not sure how 'painless' it is per se. Other accounts say you simply get "sleepy" as the toxins build up, so YMMV. I'm willing to bet it has a lot to do with the rest of your make-up: how old you are vs. whether you have other compounding medical issues (eg. diabetes) vs. did you smoke as a youth vs. did you butter your bread using your left hand vs. Lord knows what. But in the grand scheme of things, it sounds like a relatively mild way to cross the threshold into the next life.

    I hope I have been of some help, and I wish you luck on your journey.

    • Posted

      Thank you for your reply, it helped. I am exhibiting a couple of the symptoms you mentioned but it's not to bad at the moment. I am 71 and have some heart issues and treating the heart will put the kidneys away, so I'm between a rock and a hard place. Surgery doesn't bother me but with both heart and kidney problems, I'm not a candidate for a transplant. It's the dialysis that I won't do.

      Thanks again for the reply.

    • Posted

      hi Mike, hope you dont mind me " butting in" here but your circumstances are very similar to my own and i wondered , did you feel much better after starting dialysis? did the bone pain lessen. ? i am just about to undergo the procedure for p.d . as my gfr is 7. intend to have nocturnal at home. also if i really cut fown on protien intake can i lower my phosphate? which is caising real bad bone pain. thank you in anticipation.....Andy

  • Posted

    One time i asked almost the same question but it was for kidney failure. So end stage kidney failure and kidney failure is quite almost one and the same. Yeah

    Anyways, there one guy who was practising answered this question, he said it is not likely you have a direct pain in the kidney but it could be the symptoms that can cause pain. Like pain in the flank area, chills, too much pain in the back area, or the kidney itself.

    My grandmother died of kidney failure, she was almost 80-82 and she was suffering it for almost 2-3 years. She used to wail in pain, ah, ah, ah.........almost when it was in the end. It must have been extruciating. But one time even i had pain in the kidney area, and believe me it was horrible. Its like pus, not ready or fully matured nor too small or young to pluck it out. All you can do is kind a like nurture it, the area where its paining.

    But i also met a person who also had kidney failure and it was already 3 years when the doc told me that news. The only time he went to a doc was because he had pain in his back area or flank area.

    Vomiting,too much fever, chills and overall loss of strength and other symptoms. Then he went to a doc and the doc said, his kidney had failed. He was a normal average guy, and kind a like around 35-40-45 years old. He is under dialysis and living that way.

    So u see my friend, if u have kidney failure, u will experience pain in some ways. Maybe u can bear the pain, but a direct pain on the kidney area is excruciating, man. U didn't mention ur age.

    Anyways, "End Stage Kidney Failure", kind a sounds like end of life itself. Yeah.

    In the end if u want to go with glory, do so. Every human is not same. But u'll experience pain in some ways and i really hope its not in kidney area, its blunt and excruciating. If u opt for Dialysis, the machine is huge it will cost u Rs, 1.5 lack or 23-25 thousand US dollars, depending on which company u choose.

    So living the remaining part of ur life, lets say 1 month (31 days), with lot of pain. Think its a lot of oh , ah,,,ah,,,ah........God bless.

    Buddha said in the end, three things matter:-

    1)How much u loved.

    2)How gently u lived.

    3)How deeply u let go of things not meant for u.

    Peace.

    • Posted

      Than you for the information. It was helpful. As far as the pain goes, I'm counting on the Doctors to help manage the pain with prescription drugs,

      Thanks again.

  • Edited

    Hello,

    I'm currently stage 5 and i have chosen not to do dialysis.

    .

    They say that doctors would choose kidney failure due to its not a painful death.

    I can't tell you what its like to die but i feel pretty good and I am not on any pain meds.

    Fortunately i have a nephrologist is working with me. I get tired I have heard you will sleep more and more till ......

    My gfr is 14 creatnine 134

    good luck god bless

    correen

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.