How Long Do You Live After Stopping Dialysis?

My dad lived 19 days after stopping dialysis. He was not in any pain or physical discomfort during that time.

Every One’s Situation is Different

When my dad decided to stop dialysis, I searched the internet to find out how long we could expect him to live. I had heard it could take several days to several months “depending.” So if you’re looking for that same answer, keep in mind that not every one lives a given length of time after stopping dialysis. How long they live depends on how much kidney function they still have (which may maintains the blood chemistry levels longer) and whether they have other health problems. It also depends on what they eat and how much they eat during that time. In my dad’s case, he had nausea and didn’t feel like eating. So he didn’t eat very much at all, mostly drank orange juice and water. Swelling was minimal and he had urine output of less than 1/4 cup a day.

Relatively Easy Way to Die

One thing my dad was scared of as he got older was being kept alive. He didn’t want to linger or be on a respirator. His independence was very important to him. He had acute kidney failure and had been on dialysis only 6 months. He hated dialysis. He hated going for treatments at the clinic and he kept deteriorating even with  dialysis. He lost from 183 pounds to less than 120 pounds in 6 months, much of that in the last 6 weeks. Once he could no longer drive and didn’t have the energy to do anything but stay home, he decided his quality of life wasn’t what he wanted. He wanted to live until his 84th birthday—he stopped dialysis shortly before his 84th birthday and then lived 9 days after. He didn’t suffer at all. It would have been a very easy way to go for him except for the cold he caught.  The cold lasted about a week.

Dying at Home

Dad wanted to die at home, so we three girls took care of him 24/7. With about a week left, he didn’t have the energy to help us move him. So we had his doctor order home hospice care. Hospice was wonderful. The purpose of hospice is to keep the dying person comfortable and pain free. For dad that meant a bath every day and occasional Ativan for agitation. He wasn’t upset about dying, he knew stopping dialysis was the end for him, but some days there were so many visitors he got agitated.

There was no pain for him at all. He was nauseated, but they didn’t attribute the nausea to stopping dialysis. He had reflux problems for years. I don’t know if it was fortunate or unfortunate but my dad’s mind was as sharp as a tack up until the end and we were able to enjoy him until he started sleeping so much the last 2 days.

The last 5 days were very easy for him. He slept more each day and then finally went into a coma-like state about a day before he died, although I am sure he could hear us talking to him. He would squeeze our hand and almost wake up. His lungs filled with fluids and in the end he basically drowned within a minute or so with his girls by his side. It was hard for us to go through, but worth knowing that it was his choice and he didn’t suffer.


  1. I am sitting next to my mother’s bed and I can hear her breath very heavily. She had a stroke 6 years ago and in 2014 she was diagnose with kidney failure and started with dialysis two times a week. She was tired after sessions but she enjoyed life and accepted as part of life. She and my father were retired and would go on holidays and made sure she can do dialysis in the area they visits – she never let it stop her from living life. 3 weeks ago she was admitted to hospital after contracting pneumonia. That cleared up in about 3-5 days however she had a new graft in her leg and they were giving her dialysis through a catheter. That became infected and she ended up another two weeks with sepsis. She was suppose to be release this week however 6 weeks ago she had a massive stroke. They advise us that she will not ever be herself and there is nothing they can do for her. Dialysis was stopped immediately as her brain is swollen and now we just waiting… It is the worst not know when or how. She is non-responsive. Is she suffering, it feels cruel just to leave her like that. Her breathing is the worst and saliva is building up in her mouth as she cannot swallow. My mom has always been a fighter and the doctor is clearly surprise she is still living so they gave her liquid food through her drip. I feel guilty wanting her suffering to stop. Her hands is swollen – I don’t know how long still every day I leave with this dreaded feeling knowing the end is near and wishing her to transition to heaven but also being fearful this would be the last time I see her. death just seems so final. I am going to miss her but this is not my mom laying here… How long still?

  2. Janine Babusch says:

    My Father decided to stop dialysis 2 days ago. I sit here in tears at 1am from his hospice room. He is on scheduled morphine every 4 hours and already itching, I’ve asked for an order for benadryl. They began Ativan this evening. I can hear as he sleeps, his breathing is very congested. I pray that his crossing over is swift and painless, he has suffered for years with one kidney that barely functions, congestive heart failure, Afib, diabetes, hernias, neuropathy…so many medical issues. What was the straw that broke this strong man’s back? a bed sore! he had a deep abscess along the crack of his butt, had it surgically cleaned up on July 4th, the size of a baseball hole near his rectum. Embarrassed to be bathed and to tend to the wound daily, he opted not to have a colostomy and not endure another painful open surgery…. He always said he wouldn’t live to see his 79th birthday, it’s 8 days away. Is it selfish of me that I hope he falls into a deep sleep tonight and not make it to 79? I don’t want to see him suffer another moment. Tomorrow if he wakes, I will have a cake with candles and celebrate his birthday. Thank you to those who have shared their loved ones stories, i know now I do not sit alone.

  3. Charlene says:

    My father is 78 years old and decided today to stop his dialysis. His choice was to do this or have his right leg amputated. With the pros and cons for each choice, we, his family, feel he made the right choice. We are having a “Ray’s Last Call” party so he can see and be with the people he wants to see, laugh, remember better times with while having his favorite BBQ foods. He will have two or three more treatments to ensure he is able to enjoy himself. The first thing he did when we got home from the doctor’s office was sending me out for a bottle of Scotch and a pack of cigarettes. He said, “Can’t hurt now.” The next few weeks will be tough.

  4. Ive been taking care of my mother who has been under her Dr. Supervision.
    numbers are at 16 today. They want her to place a fistula in her arm, she sees her husband going through dialysis 3 times a week and does not want to go that route.
    I am sad but I respect her wishes. She,has had 2 heart atracks,and was diagnosed with dementia 5 years ago.
    I find it so hard to make her go when some days she won’t even know why she is hooked up.
    Still trying to figure this out.
    To place a fistula or not…thank u for listening

  5. I am currently going through watching my Dad die. He stopped dialysis about 5 weeks ago after an incident at the center which he actually died and they did not follow his do not revive order. We were told he would never wake up he did and was pissed. Should have been an easy ending instead my Dad as well as my Mom and I are suffering watching him go through this. We were told 3 weeks tops when he stopped and he is still doing ok. We are currently going to have his Kidney function tested as well as a few other things. This is crazy. I have been taking so much time off from work thinking its the end and he keeps ticking. I am glad gives me more time with him but it is also difficult to keep thinking today could be the last day. Thank you all for sharing it helps. My Dad is my best friend I will be lost without him but find it so difficult to watch him die.

  6. Re post from: March 8, 2017 at 10:41 am
    “Our son lived for 8 days without dialysis. I’m not trying to scare anyone, but be prepared that your loved one’s final days may not be as comfortable as those experienced by some whose stories are told below.”
    Thank you Hal.
    Praying it goes well and easy for my husband. God bless all who posted here.

  7. Saanj De Kaur says:

    My dad’s blood test in April revealed eGFR of <9 and HB of 54. He had 3 pints of blood transfusion done which took the level to 90 – 100 range. Its really confusing seeing some kidney failure symptoms disappear. He is 90. Had swollen feet and face but last week the swelling went away.Last week the strong smell of urea also went away. He gets really bad stomach ache and has been having diarrhoea for the last 3 days. He lost his appetite then regained it. He wasn't able to walk but last 2 days, he has been able to walk on his own. Had shortness of breath and fluid in lungs and now both disappeared after some medication. His body itches a lot. He cant sleep and says whole body aches. He is generally agitated, confused and depressed. Wonder if anyone can help me understand what's going on and for how long this goes on. Really sad to see him suffer since he refuses all treatment.

  8. Terry Hayden says:

    I just ran across this page looking for more information on Chronic Kidney Disease and home dialysis. Thank all of you for sharing what is going on and how it is effecting you and your families. I will turn 70 this month and found out, by accident, that I had stage 4 Chronic Kidney Disease 4 years ago. My numbers have run in the mid 20s down to 19 since I found out. I am still in pretty good health and active except for my Kidney Disease. But, I know what most likely lies ahead, dialysis and or transplant. Your stories have helped me understand, a little more, what someone and their families go through and what I may face ahead. Thank you again, you are all in my prayers. I will keep checking back.

  9. Hi I am muhammad. I am 32. I had a transplant when I was 12 and and now my transplanted kidney stopped working aswell. I am on dialysis now but really tired of life. Thinking to stop dialysis session but my family is not allowing me to do so.really confused what to do.will it be a painful death. Reading from the comments above I hope not.

  10. My dad informed me today he decided to stop dialysis last week. He had a whipple surgery 11 years ago and has struggled ever since. He has adult-onset Diabetes and has struggled with seizures, several falls, neuropathy, a partial hip replacement, pneumonia and trouble breathing. He’s been in the hospital more times than I can count and his medical bills have exceeded 1 million dollars (thankfully insurance footed most of it). Lately, his legs have been giving out and he can hardly walk. He’s decided he has no more fight. With such a low quality of life, I can hardly blame him and I fully respect his decision. Still, I wasn’t prepared for him to purposefully stop dialysis and I’m not fully prepared to face his death. He’s just shy of 67 years old with a grandson who is 3. My father and I aren’t incredibly close and I’ve often wished he’d been more engaged in my life. I’ve tried to foster a relationship with him for decades. In this last decade, he simply didn’t have the energy or wherewithal. I don’t know what to say exactly or what to do to help him. He says he wants to remain at home with his wife and be in peace. I talk to him every few days but it’s hard to sit here knowing one of these days will be his last. What do you say to someone who has not really been there for your entire life and has disappointed you so much yet you can’t face the reality of him being gone? Jesus, this is hard.

  11. Our son lived for 8 days without dialysis. I’m not trying to scare anyone, but be prepared that your loved one’s final days may not be as comfortable as those experienced by some whose stories are told below.

  12. Therese Williams says:

    I am sitting in a hospice room with my 62 year old brother who decided to stop dialysis 3 days ago. I really appreciate all of the shared wisdom. He has many chronic illnesses and just couldn’t take how he felt after dialysis any more. No one told us about the itching, so now I will know. He has been sleeping all day and only wakes up to throw up. I respect his decision and pray this doesn’t take long he has suffered long enough. He has end stage renal failure, congestive heart failure, afib, lost most of his sight, diabetes, lost leg, toes on other foot and a finger when fistula didn’t work, diabetic gastric paresis and neuropathy and sepsis 2 weeks ago. I will keep all of you in my prayers.

  13. First of all I would like to thank everyone on this site for posting their situations. TODAY I lost my mother after 6 1/2 years on dialysis. I watched my mother go from a big girl of around 180 lbs down to 72 lbs at the time of her death. She had a host of other major health issues that also developed over this same time frame and finally major congestive heart failure. Her overall health diminished to the point that dialysis left her virtualy comatose on the day of dialysis and very weak, confused, and bed ridden the day after. Also the stupid graft got clogged again and quit working, her heart was so weak that the Doctors didn’t think she would make it through any procedure requiring anesthesia. Her last dialysis was Monday and she died early this today (Friday) peacefully with me and my wife at her bedside after being placed on Hospice. I am absolutely devastated at her lost but I’m at peace at knowing no more Illness, Pills, Procedures, Operations, Hospitals, Nursing Homes, and mostly no more Dialysis. Dialysis alone is very challenging but throw in other health issues and its a monster of a battle.

  14. Just left my father who has been diabetic for 28 years bit by bit it has ruined him , took his sight , mobility, mind everything , to the stage where he could barely speak finally as a family we had to agree to stop his kidney dialysis after 9 years we as a family have now left him after a 3 day vigil never known a man who is still fighting till the end after 13 days off dialasis is still hanging in there & fighting to see him laugh today & nod his head says it all about this strong proud family man he is 77 years of age & I’ll love him forever from your son & rest of the family xx

  15. My dad had severe vomiting about 25 days ago. The next day he had such severe pain that mom had to call 911. Hospital said he had pancretitis caused by gall stone blockage. Continued to get infection, stroke 3 days later, kidney failure… he missed his 2nd dialysis treatment. We were told he has only months to live even if he would continue dialysis, but now even less. In hospice for the last 2 days. Speech is becoming more slurred, when he does talk. Hoping he is not in pain and passes quickly.

  16. The dialysis center sent my dad home twice this week because of his blood pressure dropping. They say he is too weak for them to treat anymore. Today is the 9th day since his last dialysis. He hasnt spoke a word in a week and hasn’t opened his eyes in 4 days. He is now sleeping in a coma like state. His is breathing deep breaths and doesn’t seem to be laboring in his breathing at all. He is on oxygen. It’s hard to watch my one time hero and go to lay motionless. How much longer does he have before he passes. I just want him better. Whether that be alive or not.

  17. I’m 34 yrs old end stage renal disease
    I want to stop dialysis
    Already 2 failed transplant
    Family will not allow to stop dialysis
    What should I do?
    16 yrs on medication
    Now I’ve heart problems.

  18. A DeLacey says:

    Im struggling. My mom is 62, ESRD as a result of chemo from non-Hodgkin Lymphoma diagnosed at 57. Since them 2 more cancer diagnoses. She lives with therapy 2 days a week and an ostomy as a result of cancer #2 (rectal). While she is a trupper, and fights cancer like a boss she cant seem to keep an access for therapy. She has had 4 placed in her arms and had them worked on countless times to no prevail. With weight loss over 100 pounds, constant sickness, endless vomiting, and extream fatigue I know that this go-getter’s quality of life is truly living for the next doctor apt. I also know that she keeps going for me. Im her only child and she is divorced from my father who died 3 years ago. She is currently in the hospital as she had another access put in her leg last Thur. This is an awful procedure. She has 50+ staples from her hip to her knee. She is in outrageous pain and very little hope that this will even work for a few months or at all. She has a catheter in her chest thats been there for 6 months. The DR. says it has to come out ASAP, and it really dont work well any way. I cant stand the thought of letting her go. I know i sound so selfish, With out her Im an orphan. I need the strength to tell her its ok to stop being tortured. I just love her so much.

  19. Hello,
    My father is 75 and stopped dialysis 11 days ago. (He had gone 3 days a week for the last 13 years.) he had his transplant in 1966.
    Hoping someone might be able to shed some light re. what to expect in the coming days–on day 9 he started sleeping the majority of the day. Today, day 11, nausea is very bad. He is progressively more short of breath, and experiencing ESRD itch. He is taking dialaudin to help with breathing about 4 times a day. Understanding that no one can predict the end, I’m wondering if anyone might relate similar experience and expectations? Thank you. All the best to the caregivers and to their loved ones experiencing this.

  20. Tracy Young says:

    I am a dialysis patient, and I love dialysis.

    Before I started dialysis (2 years ago, 46 years old) I was sick and unhappy, and i was so weak that I getting out of bed to go to the bathroom was an ordeal, and I vomited all the time.

    Then I started dialysis, and I felt better immediately. I got stronger. I got happier. No more nausea. I regained my ability to walk around and do things and drive a car.

    Dialysis is not just waiting to die, it’s getting a life back.

    For those of you thinking about starting dialysis or not, I say yes, do it. You may find that you feel much better in a short period of time. You may find that your mental and emotional state improves.

    And if you don’t feel better, well, you can always change your mind and stop treatment.

    But if you don’t start dialysis you won’t know how much better you can feel, and how much you can enjoy your life again.

  21. My father decided to stop dialysis after 2 1/2 years. He was 79 and arthritis had really gotten to him. We started hospice the morning he didn’t go to his regular session. We were on hospice for 10 days. He passed peacefully in his sleep. He was already at the VA Home and hospital for a month so they made sure his liquid intake was 32 Oz a day (something he didn’t do at home). The first day of hospice he felt great instantly with the morphine. He got it every 2 hours under his tongue. He talked, laughed , and smiled, made phone calls to loved ones, I sat with him the whole day. After that day, he slept a lot. He started to hullusinate (sign of kidney failure) talking in his sleep, reaching for things in his sleep, talking to loved ones that had past years ago as if he was reliving his childhood. We were told he would swell from fluid build up and develop a dark Shiney crust on his skin, but none of the happened! As the days went on, he became very confused, some people he recognized, some he did not. He slept a lot. We continued to request morphine so he would not be in pain. Note: if your loved one is in a facility, GO AND CHECK ON THEM EVERYDAY IF YOU CAN, MAKE THAT SACRIFICE, BE VISIBLE, ASK QUESTIONS, HAVE THEM CHECK THE CHARTING BOOKS TO SEE WHAT WAS DONE FOR THE DAY. Alot of these facilities are short hand, but if they know you are not coming, they may not stay on top of things. GO EVERYDAY IN PERSON!! Towards the end, he started to get antsy from scratching, that was normal from toxins. You can request they be given a cream that can be put on their wrist and spread throughout their body. He started eating less and got to the point where he could not feed himself if he did eat. Daily, his flood pressure was normal, breathing was normal. On the 10th day of hospice, I normally go at 6:15 p.m to catch the nurse before she leaves at 7. Something told me to go ahead and go at 5:30, so I did. He was sound asleep, snoring. The nurse said his blood pressure was fine, breathing fine, ate half his meals, no swelling, like all the other days. So I left about 5:40. I went home, and at 6:20 I got the call. The nurse told me he didn’t suffer, he passed in his sleep. If I had gone at my normal time, he would have passed while I was there. I don’t think I could have handled that. Glad I listened to God’s voice! Best experience if my life. He passed without all of the pain and misery he was living with.

  22. Hi I’m just following up on my mother’s story . She passed away on the 31/05/2016 without any pain at all .I would recommend if your loved one is in a nursing home that you call in extra help from a Palative care organization as I had to .The nusring staff at the home were next to useless .

  23. I was diagnosed with chronic Kidney failure last week I am 45 yrs old I have no desire to ever do dialysis I wish to just live out my time happy and unplugged from any machines. the Dr has tried to convince me but finally she realized I was serious and ready to make my own choices

  24. My mum is currently in the nursing home she had her last dialiys 5 days ago .She has ill repairable heart disease so she has decided to die.I just can’t comprehend my life with out my mum.She is 78 and was so full of life until kidney disease caused by dibeates came Along. My main fear is that she will be in pain something I don’t want and couldn’t was very helpful reading other people’s stories. I just hope her death is quick and pain free it is tearing my heart out watching her go thru this.I know it is her decision and I need to stay strong and support her but its just so very hard.

  25. Michele Murray says:

    My husband was suppose to have dialysis today, but decided not. He was planning on stopping last week, but 15 minutes before heading to dialysis today he said he’s done. Hospice is coming on Monday. He is only 53 (I am 47). His health started declining a little over 4 years ago with absolutely no warning. Diabetes! A silent killer. They were right.y husband was in denial when he was diagnosed about 15 years ago. Needless to say they were right. Congestive Heart Failure, COPD, peripheral neuropathy, ED, depression, chronic pain, amputated toes on both feet. Then came the kidney failure. He started dialysis 3x a week 4 hours each time 15 months ago. Since then he developed more pressure ulcers on his right foot. Eventually needing his leg amputated 3 months ago. Not healing as his new diagnosis of Calciphylaxis. Now his left foot has 2 large pressure ulcers not healing. It too will need to be amputated. My husband said no. I am done fighting. I’m scared but he seems at peace. I pray that he goes peacefully and pain free. To all of you going through this God Bless you!ay God give us all the strength we need to get through this.

  26. janet r p says:

    my husband is 88 yrs old. been in PN dialysis fot 4-1/2 yrs and we stilled lived an active life. within 2 months peritneal started to fail him.
    now on fistula hemo dialysis 3 times a week. he is 98% legally blind. i have been his care giver all thru this. had e lung taps and then lung surgery to remove a large mass while in hospital they found a heart valve had closed . and he is filling with fluid, they want to do heart surgery. had 3 doctors tell us now won’t make it thru surgery. can’t breath because of this. so this week we are going to meet with surgeon for his opinion . but i think JOE has decided to stop dialysis and we are going to contact hospice. we have been married 66 years and joined at the hip. he is the love of my life. how do i give him up??

  27. Paul bruno says:

    Bear in mind from my last post, I’m 54 years old. Never smoked or drank. Have always been in good health. I’m not saying my decision is the right choice for everyone but I feel it is the right choice for me. By someone telling me to think about my kids or my mom or wife…. THATS BEING SELFISH!!!! Those people saying that.. ARENT GOING THROUGH IT ? PAUL AGAIN

  28. Rahman, I am going through the exact same thing with my mother. I have been fighting for my mother to continue her dialysis, because that’s what she wants. She doesn’t want to die, but for reasons similar to your mother, the doctors told her she can no longer continue. Your post has brought me some sort of peace. Thank you. God bless.

  29. Penny Colley says:

    Today marks one year since Mum stopped dialysis. We were given a two month prognosis. In the meantime a fall took Mum to hospital and it took a month to discover that she had fractured her patella (knee cap). Mum did not want to start dialysis in Oct 13, but did so for Dad. She has always felt that life on dialysis was a waste of time and would have rathered not to have began at all. Mum has no quality of life, is listless, her hands swell, she has no appetite, she is withdrawn and needs to be turned in bed. The cruelty and torture are a direct result of the prognosis and the expectations of that prognosis. The reality is that Mum’s kidneys have sufficient function that will see her in hospital for maybe quite some time ahead. My Dad suffers depression and guilt and I am running on empty. It was to be a quite, easy exit, but no.

  30. A. Turner says:

    My husband has decided to stop his dialysis 19 days ago. He is not in pain. He sleep a lot. He is 86, my biggest concern is he itch a lot. I have not read where that has happened to anyone else. I was told that the toxic in his body is causing the itching. The hardest thing is not knowing what to expect or do when the time comes. He is at home and with hospice. I am so thankful to God for their support as well as our daughter and son. He has lots of swelling in his feet and cannot walk any longer.
    My prayers are with each of you during your difficult time.

  31. Errol Taylor says:

    I came across this page as I needed to know more about what happens after dialysis. My father who is 75 has been in renal failure for more than 10 years. He has dialysis 3 times a week. He developed prostate problems and also has vascular dementia. His dementia has become markedly worse since christmas and he regularly has falls and ambulances have to attend. My mother has been his carer up to a few weeks ago until we encouraged her to accept outside help. This week his doctor has taken the decision to stop dialysis as my father had another minor stroke on sunday. He is bed bound now and is waiting for a place in a hospice. watching both my father and mother suffer has been the hardest thing to bear. My sister lives very close to them and has her own health issues but she visits every day. All of our emotions are running very high. We all understand that my father’s quality of life is almost zero ( mother’s too ) and has been for some time. We were agonising over how and when to make the decision to stop dialysis until it was taken out of our hands by the doctor. It has been a relief to know that passing will be virtually pain free

  32. maria arriaga de hill says:

    So glad find this place….just read some of the comments…but will read the rest mom is in the final step her kidney stop to work(she had high pressure for about 40 years that demaged her kidneys)..she never wanted dialysis..she is 85 years old…in hospital for one week and in home for a month…no sleep that all…her legs hurt so bad but she wants get up….so sad because she was a very active person…and doctors no give hope…just we waiting for God will….but we found a person who make a special mineral water (AGUA ISOTONICA) and is the last we will try….so for now we just pray for her and for my brother and sister who take care of her….I travel every week to help them…they live in Monterrey Mexico and me in San Antonio,Tx.God bless you all!!

  33. My Dad stopped dialysis 5 days ago, he seems to be ok does`nt look any different still mentally all there hasn`t eaten anything since stopping, i don`t know if he`s trying to starve himself or if he genuinely has no appetite. He just wants to sip lemonade. He has basically been in bed for the last 2 years very depressed with having to do 4 exchanges a day, I totally support his decision, I am struggling with not being with the family as i live 2 hours away in another town and I can`t just tell my work I dont know how long I`ll be off as we have been told it could be days or weeks. Its such a heart wrenching thing to go through, its a waiting game for the enevitable to happen tough for everyone

  34. First…I’VE READ EACH AND EVERYONES POSTING HERE and my love and prayers go out to all of you !
    To you who wrote you just want to go or wished to just die right now, I can only say that I am trying to understand what you are going through and I pray for your wisdom, strength, comfort and peace! I found this site searching for answers because my friend is right now in the same position but out of nowhere it came! She had a cold for 3 days and then could not breath good enough, causing her hubby to bring her to the ER. They immediately admitted her and had to put her in a medical induced coma, saying she only had a 5% chance of surviving due to sepsis and her lungs looking like shred. Her toes and feet turned black over night. Blood transfusions and dialysis while in a 3 week medically induced coma. She improved and everyone was happily shocked. Time to wake her up. During 4 days she slowly woke up and they were able to take the breathing machine off her, too. It’s been a week now and she is laying in that hospital bed weak, confused. Dialysis every 2 days. Blood transfusions still needed twice a week, Doctors say. A physical therapist comes into her room now and moves her legs, sits her up so she can learn to hold her head and lift her arms again. I do not know how long it will take for this physical therapy to work but I’ve heard good things about it. Looking at her, I really wonder how someone can come back to what they were before from this and in her case, no one knows if her kidneys will start working again yet. So, we all hope and wait. She is 60 but was a very healthy and fit, full time working and foster mom of a 13 year old foster daughter for the past 7 years. Her hubby was just laid off work 2 days before Christmas. Their entire family life has been changed in a matter of 3 days….. Her hubby is trying to stay strong and we all pray, pray, pray. I believe strongly that God can heal and perform miracles but I also believe that when we make the wrong choices, the Godly plan of our life to end here on earth may be prolonged due to situations like this one. So, I do not really know what to say or even pray for often. I just tell God…please heal her if it is your will. What else can I do as a Christian? I can not ignore the fact that we all have to go home (to God) at one point and if medical science keeps us alive here on earth longer, well, that is what we are seeing then…..people suffering ? I do not really know. I also do not know what I would do if in a situation like this but having seen my friend now every day since she was hospitalized….I am scared. I see the suffering but I also see some improvement. We do not know what will happen to my friend, yet…. The Doctors keep saying she is improving and we will see… Umm? Ok, so, is she improving to go home at one point and keep on living her normal, daily life or is she improving just to stay alive and will go home or to hospice to be taken care off? We do not know. I do not recognize my friend anymore. There in this hospital bed is not that person that I knew gardening for hours on the weekend. Having a fund TV night with her foster daughter. BBQing with us and laughing. In this hospital bed is a woman with a changed, very low squeeky voice now who can now may be finish one sentence before getting tired. She can not lift her arms or legs or her head. She can lift her hands, yes. She mostly sleeps. Her hubby by her site all day and night. The hospital doing the same thing every day. I am waiting. Waiting for some news on what is going to come or how it will be. Am I impatient? I don’t know. I’ve heard of people coming out of this and living a good life again. Her black toes and feet turned 90% normal again and Doctors say the rest of the dark spots will come up and fall off as dead skin. Whatever that means. In the first week they were talking about amputating her entire legs….ugh. Yes, I am a believer in Christ but yes, I am also scared to see this, know this now and have learned more about this now. What would I do? Knowing myself, I would probably try medicine if there was a chance but if I’d have to live so miserably, I would ask God to take me home. I feel for each and everyone of you here ! I don’t think anyone has a right or wrong answer in these cases. I do however also believe in our nature and agree with the lady that wrote about no dialysis and exercising, eating right etc to get the body healthy again. I would defin. do that, too before agreeing to go through this dialysis and blood transfusion that sucks you down every 2-3 days with no quality of life left. My oldest daughter is also a critical care nurse and believe me she is as I am very realistic. She too says one does not know in the case of my friend. So, we wait. But for how long? Will that hospital say she can no longer be cared there for and then what? Are these patients going into a care facility then or can her hubby take her home? I will keep praying for her to be healed, of course. I just am wondering. Thank you for reading my post and again: I’ll pray for all of you 🙂

  35. My husband is 32 years old and has been on dialysis for 11 years now. We have 2 young sons 9 &11. It makes me sad to see my husband change each day he is tired and weak, sometimes I am guilty of not understanding how he feels , I am happy that I’ve found this site it has opened my eyes to see I’m not the only one taking care of a sick spouse /family member. There are days when I fear what our lives hold ahead. Are there any young couples going trough hard times plesse share. Thank you all for sharing your stories.

  36. Glad to find this, have been searching for answers for what my father would experience now that he has decided to stop dialysis. His last treatment was 3 days ago and he is home on hospice now. He is at peace with his decision. He wants to spend his last days with his kids and grandkids instead of at a long term care facility. My dad has had heath problems due to uncontrolled diabetis for years. His kidneys started being severly affected several months ago. He has been doing dialysis 3 times a week for a month or more but was very unhappy and due to other health problems such as extremely low blood pressure lately decided to stop dialysis. I hope for at least a few more lucid days. He actually seems really good right now but a few nurse friends told me this is most likely his body “rallying”. Basically a calm before the storm. I just hope once he becomes less lucid that it happens quickly for the sake of his wife.

  37. My mum is 85 years old, we only found out recently her kidneys were damaged, last week she was rushed into hospital as she was so week her body temperature so low, since she has been in she had dialysis but it did not help, last Saturday they gave her a few days to live, she is still alive but sleeps most of the time, she is in no pain but it is heartbreaking for me and my siblings to watch her. We are with her a lot of the time but she only just above manages to say hello and then falls back to sleep. She today has some kind of white stuff on her lips which we don’t know what that is, her toxins have risen a lot and we are trying to get her into a hospice where she is more comfortable. She does not complain at all she just sleeps. She is a diabetic as well but she is on no medication now at all, except for an anti fitting tablet. Its so sad, we don’t know how long she really has left.

  38. Nick Cefalu says:

    I am 74 been having c.k.d. for over3 years, I am near the point of Dialysis, But speaking with my Doctors, it is a big chance.. I am still in fair health, but my other problem is the heart. I have had 5 bypass surgery and several stents. They say I need another stent or so. that will kill the Kidiney s all the way.
    then Dialysis, wow I just do not know. I do not want to be tied up, I would have to travel 75 miles one way 3x a week for it.;
    What would I be a Zombie?? Just don’t know. I still have a family, just Confused..

  39. My dad is 82 and has CKD; last check his kidneys were functioning 8% and he is refusing dialysis. My family is trying hard to respect his decision (my mom and my 2 sisters), but I admit it has been very hard. For the last week, my dad has been extremely ill. He’s been vomiting and has been experiencing pain in his back. He was hospitalized for a few days because it was thought he had a bowl obstruction. He is back home and he has been deteriorating each day. He is weak, not sleeping, still vomiting and experiencing many of the symptoms of the ‘end stages’. He knows his time is coming….for the first time he said to my mom tonight “it’s coming”. My dad is a strong, often stubborn man, but I honestly never thought my dad would admit out loud that his time is near. Breaks my heart! As I write this my heart hurts and my eyes fill with tears. I want so badly to make my dad better, but I feel so helpless. I want to do more than to just be there for him. I know death is a part of life and my family is trying to prepare for my father’s death…but is one ever fully prepared? My dad will go knowing that he is so very dearly loved by his family and he will be dearly missed and will also know that his family will lean on and support each other during what will be one of the most difficult times in our lives.

  40. My brother is 64 and 11 months. He is currently in hospice at the care facility that he’s been living in for the past eight months. At 61 he was living alone, and was diagnosed with ESRD, along with COPD, Not a very healthy guy, but fire in his veins. He underwent surgery to receive peritoneal dialysis. There were many episodes over the next couple years where he would have a fall, break a bone and be transported to the hospital via ambulance (of which he was somehow able to call 911, or one of his siblings!). His apartment had stairs, and we were trying to find him first level apartment when the last fall happened, ironically while retrieving his dialysis fluid at the bottom of the steps (he would not allow us to bring the boxes of fluid up to him, as he is very independent). Long story, shortened, he broke ribs, a scapula (2nd time in a year-the other one!), and had other contusions, but managed to crawl up the stairs and call 911. The next day is when I heard from him in the hospital. I went to see him, and he was in such sad shape that it scared me. Later that night, he had a mild stroke, then was moved to the CCU for 12 days. He was transferred after one month to a Skilled Nursing Facility (SNF) where he underwent more hell with under skilled staff and peritoneal dialysis. In early February 2015, he was admitted back to the hospital with peritonitis – very serious. He somehow pulled through that, and was transferred to a different facility after another one month stint in the hospital. In late March, he underwent another surgery to have a fistula placed in his arm to receive hemo-dialysis, which he never wanted, but he wanted to live, and most SNF’s are not equipped for PD patients. Miraculously, he pulled through the surgery and after effects of anesthesia. No quality of life, and many times during dialysis he would sign himself off early, or become so cantankerous that he would be taken off due to disturbing other patients with his loud complaining. He did fight hard every day. It was when swallowing food became an issue, along with his food having to be pureed that he really lost all interest. After a week in the hospital earlier this month, it was determined that his overall declining state of being was never going to improve. We made the tough decision to do hospice. I’m grieving as I write this, as I have been a main care taker in his last years of life. I hope this helps someone to know that dialysis can be a good thing, but the quality of one’s life is really what it’s all about. I put him in God’s hands. I wish for him peace, at last…

  41. Maricar Abad says:

    @ Katherine Bowen. . . .thank you for sharing.
    My granny stopped Dialysis and Im lookig for answers on how she is feeling now.
    Im sorry for your pain. I pray you will find your peace. . .eventually . . we all will have to go.
    God bless

  42. Katherine bowen says:

    I just turned 31 yrs old, was born with a kidney disease called all’port syndrome.. Right before my 15th birthday. I had to have a kidney transplant, 4 yrs later, I had to start dialysis, first pd, then hemo, back to pd and now hemo again, my first dialysis port (in my arm) messed up. So they put one in my left, which now I’m having problems with, I don’t enjoy life, I wish that everyday will be my last, I feel like a burden to my family and I don’t hardly talk to friends anymore, I’ve tried stopping all the pain only for my mother to rush me to the hospital cuz I was dying, I have other health problems, but Drs can’t seem to find out way, I’ve been stuck, probed at etc sense I was four yrs old. I can barely do anything for myself cuz my body isn’t very strong, and family (mom bf,ect) think it’s because I’m just being lazy, they have no idea what I go through or how bad I hurt and I’m living in my own hell, winter is here and it’s by far the hardest on me, I’m ready to let go, I can’t bare the mental, emotional and physical pain anymore… I know some ppl say it’s not painful, but I know it will b for me… I just need someone to understand, what I’m going through and that I can’t keep on, this is not away anyone should have to live… I fought and fought but I no longer have the energy to fight anymore.. So anyone who’s family member feels the way I do, stand beside them through it and try to be understanding, cuz you really don’t understand how hard it is..

  43. LOST MY MOM TO KIDNEY FAILURE 15 months ago it was her decision not to do dialysis sounds like she made right decision I didn’t have to make it but its all hard still not at peace with all of it still looking for answers , reasons

  44. My step dad was on dialisis he also had high blood pressure he had dialisis for 12 yes he was doing great on dialysis until my mom passed he lost hope and eventually gave up to be with her but dialysis helped him live a good life

  45. My father is 68, he just did his first week of Dialysis. He has diabetes and ESRD. He just told the doctors and me that he doesn’t wish to continue Dialysis. I’m scared of what’s to come. I guess it’s time to make his last days as comfortable and dignified as possible. It’s crazy how fast life changes. A decade ago he was a strong man, and the past few years have taken it all away from him.

    Thank you everyone for sharing your stories. It’s touching to read. I feel your strength, and it gives me strength as well.

  46. My Father is 65 year old and he was diagonised for Kidney problem (Creatine level crossed 3) . We could able to postpone dialysis till last year. His creatine level reached 10.0, we started dialysis and he as recovering for the past 6 months. Recently , he had a block in his fistula and there after we could not find any Arteries to continue dialysis. So Doctors adviced him to be taken back to home –8day without dialysis as of 01-07-2015. He slowly stopped taking food and hence we have to stop all his life supporting medicine. He is always on bed and managing , 3 times a day, 50ml of fruit juice. Already 1 month passed after his last dialysis. Neighbours and well wishers are hoping for miracles for this recovery. But over the past week he has suffered a lot on bed. Me and Mother are with him supporting for one month. Now we have put a Hospice agent to take care of him in the morning. Everyday passes by with lot of Anxiety and uncertainity. Over the past weeks, me and my family are going through mixed feeling…. We are totally helpless as we cannot contiune any treatment at the same time we are seeing our father for another day. I dont know whether to curse or Thanks for this situation!!!.

  47. Pradyuman says:

    I am 35 and it’s been three months now. The renal failure has taken away my job, money and enthusiasm. I am on dailysis and hospital schedules is all I have now. It is pulling me away from my loved ones also. I think it’s better to leave now.

  48. My 73 year old mom decided no more dialysis. That was about a month ago. She was living in a nursing home for the last 7 years after suffering a stroke. In January of this year her kidneys failed and it was hospice or outpatient dialysis. She wanted to try it but it was all just too much. We tried to support her through the dialysis and encourage her but she finally wanted peace. We put her on hospice one week ago and brought her home. She hasn’t had dialysis in a full two weeks. She is in her last days. We are loving her right to the end, respecting her decision and wishing that life didn’t end this way, painfully. I keep reading that it is a “good death”. We are praying, singing praise songs, gentle touches, kisses and whispers of how much we love her. While this is hard for us, she has endured more and deserves the peace she seeks. She is a part of all of us. This is love.

  49. Today my husband was transferred to our local hospital after spending two months at a large teaching hospital where he received dialysis, two hear stints, pic lines, both of which hemorrhaged. Through all of it what alarmed me the most was that he was so mentally out of it. His cognitive function only improved after many blood transfusions. Tonight he was told his heart is only functioning at 30% capacity while still requiring dialysis every other day. Now an hours drive each way. I suspect that he will decide at some point to stop dialysis and let fate takeover. Bringing him home to the dogs would be perfect. There is only the two of us.

  50. Cindy Schmidler says:

    I applaud your selflessness in undergoing dialysis in support of your husband’s wishes. While I see untold evil in the world and often even in my own heart, I do believe the world was designed and created by God. I believe that he has revealed himself in creation and in the Bible. When I genuinely seek him I find answers as well as new questions, but I also find hope.

  51. I have ESRD (Stage 5) and have been on dialysis for 14 months. Fistulas are grotesque and dialysis is barbaric. When I was diagnosed at 63, I did not want to even start dialysis because I had needle phobia and was positive I would not be able to endure the treatment. My husband asked me to try so I could live a few more years with him. I am going to dialysis 3x/week for 4 hours a session so that I can exist for my husband. Should he pass before me, I will stop dialysis immediately following his death. I think about stopping it every week now as I do not have a satisfying life but an existence. I have other medical problems that I have to live with besides kidney disease so when I deteriorate to an unacceptable stage of existence and feel like a burden, I will stop dialysis and hopefully have what is called “a good death”. My daily thoughts are filled with dying with dignity and I am an agnostic searching for something to believe in. I was raised Catholic but discarded all Christian beliefs 40 years ago. I believe there are worse things than dying. There is so much suffering, pain, starvation, homelessness, war, murder, rape, overall evil in this world.

  52. Our mom just away a week ago, she had a congested heart failure which caused the renal failure and dialysis could not tolerated due to extreme low blood pressure and her right side of the heart was damage. We were told due to high risk the dialysis cannot be continued and we should take her home and give her comfort at home under hospice care. Her last dialysis was on March 30, 2015, we brought her home on April 3, 2015. All the family members got together to see her as she was coherent. She would getting tired and sleeping 18 hours to rest. She was very weak. As the Monday rolled around which was April 6 and now it 8 days gone bye since she hasn’t had dialysis but she was given very strong diuretics , she was getting weaker and she was not able to stay up or even sit up for more than 10 minutes in morning which use to be better times for her in past three days. As the evening continued her condition became worse she started to loose vision as the toxins started to build in her body. She became very restless she was administered very low dose morphine and Atavin to calm her but the whole night she was very restless. In the morning of Tuesday April April 7, she has become more restless as she cannot see, the nurse from hospice administered extra doses of morphine and Atavin to calm her to call and end the doctor decide to sedated her as she has become more more restless due to toxins build up in the system. The breathing pattern changed to 8-10 per minute which changed to 6-7 later. Later that night the doses were given as directed by hospice nurses and another sedative was given by hospice nurse at 11:30 pm and she passed away at Wednesday 3:30AM she only lived 10 days from her last dialysis. She has multiple factors Congested Heart Failure played a major role in renal failure and failure of the other organs. The doctors actually told us 3 weeks to 3 months but it was few days.

  53. Your father was a brave man, I not only respect but may even emulate his decision.
    I am going through his turmoil now and considering stopping dialysis.
    I am only 50.
    You all must understand that were it not for our families, certain types of us would never sit in that chair to begin with.
    It makes the decision difficult. We love you, we want to be with you, but it sucks to have to do a dialysis which might clean us enough to keep us alive, but never enough to feel much better, and life becomes waiting in between treatments, waiting coupled with the usual symptoms plus a perpetually sore arm.

  54. Sorry for your pain all that have made the choice,and I respect each and every one of your choices. My brother has lived with really bad diabetes a lot of his life, lost his leg,his eye sight has had strokes, he’s only 40, and this past year has been on dialysis.. Monday was his last session, he couldn’t take it anymore,it made things much much worse.. Today is Saturday and he has slept for 2 days now.. he is soo quiet and calm. I am glad he longer feels his pain, but just wish this journey to end for him. Peace to u all..

  55. Joanne Galante-Williams says:

    My dad was diagnosed with leukemia and acute kidney failure 3 days before Christmas. He has been on Dialysis and was receiving chemo at the same time. He last chemo session was 3 weeks ago and he was very weak so he decided to stop the treatment. His doctor told him it was up to him but his levels weren’t improving with the treatment. He has been continuing with his dialysis but he has been very tired and his blood levels are really low. He has been getting at blood transfusions on a weekly basis. He is in the hospital again and is considering having his dialysis stopped. I don’t want to lose my father but I also don’t want him to suffer. He hasn’t enjoyed life since this nightmare started in December. My mother is a mess and so are his children, there are 5 of us. How do you cope with losing an loved one.

  56. My Mom started dialysis a month ago. She’s always so tired and gets sick easily. I really wish she wouldn’t do dialysis because even though it IS keeping her alive, it’s not allowing her to live. I’d much rather her be at peace in Heaven than suffering in hell. I think she feels the same way but is afraid to die.

    Anyone else feel the same way?

  57. Eloisa James says:

    Hi. I’m glad I found this. Reassuring to know others have gone and are going through tnis. My mom’s 71. She’s been on dialysis for 13 years & been hospitalized since Dec (Had amputations, feeding tube and last night ). She told us she doesn’t want dialysis anymore. Hospital told us they can’t force her because she’s alert. I love her so much and it hurts me to see her in so much pain. I hadn’t thought of hospice, but I will share that with my family. I hope you are all doing well.

  58. its dec 18, 2014. im sitting in my moms nursing home room. she stopped dialysis today. shes been on it over 7 yrs. shes 75 now. we just lost my dad to lung cancer on halloween. i am scared. i just want mom to pass peacefully, but im scared since she is not passing urine, all the fluids will cause her to have a hard time breathing. so far, shes resting comfortably. i just wish i knew how long before she leaves us, and pray its while she sleeps.

  59. I thank all for their words. I feel sad for all of you. For you don’t know, what you don’t know… And in many of your cases, it’s too late in this life. Be thankful that God promises a resurrection of your loves ones.
    I am working with a very good friend (we’ve been friends for more than 10 years). She’s always been a hard worker and provided financial, emotional and spiritual support for her family. Now she’s on Dyalisus. In all my research, it goes back to a connection to the heart. She wants to come off that particular treatment, so the heart is where we will begin. Nourishing and strengthening that muscle…. Because after all, that’s what it is. The most important muscle in your body. I myself have a congestive heart failure diagnosis. I have chosen to treat the diagnosis as what it is. A picture of how I’m doing right now. Not the picture of who I will be next year. She wants to follow in my steps, so we will take this walk to a healthier fuller life, together over the next few years. The benefits far outweigh the sacrifices. I have given up everything I love to eat. She will too. I can’t have white wine, which I love a glass before bed. I must exercise in a way I haven’t since high school…. I hate it…. but I’m making myself learn to love it. (Btw I’m only 46).
    As a mother of 5 and grandmother of 3, I intend to live a much longer life with my friend walking beside me. We have both worked very hard in our lives as single parents and we DO NOT DESERVE to have an end such as the ones predicted by Doctors. I have done necessary testing and been told of the regimen they would prefer. Every piece of research I’ve read, points to premature demise following their recommendations; so against THAT ‘better judgement’ , we will eat and drink and supplement our ways back to health.
    My love and prayers are with everyone on this site. May Jehovah and His son Jesus keep you and your families in Their warm embrace, while you wait patiently on the return of your loved ones. I will be alive if it’s our fathers will, when that time comes, to greet mine.

  60. No one is alone n this world. I have found that if you r think,driving walking or going through a family sickness. Thefe is someone out there going through the same. I’m going through the same thing with my mother as I type this. 62 years old she has been going to dialysis for 6 years. Plus dealing with many other sicknesses . You just decided enough was enough . She has been sleeping constantly at home under the care of hospice and meds. With just hrs left to live. She has lived a life most women would never dream of .Rasin 4 of her own children and then raising 3 more grandchildren. She is an incredible woman and we will miss her when she leaves. Cherish wat time u have left if you are one of those people that driving ,walking or going through this time in life when you are about to loose a wonderful friend and mother . We love you and always will

  61. Yahaira Laboy says:

    Hello, im from Puerto Rico, and im going through the same thing, with my grandpa, his been dialisis for 5 yrs. His 83 yrs he used to be very energetic, provider, very hard worker, wonderful father, I was raised by my grandmother and him, always im currently living still with them, im 33 yrs, they have been there for me and I somehow have stayed with them, I work all the time, and come, home, I have no children of my own nor am I married, im single, anyways, my grandpa and I have always ben closed, we have our arguments, and stuff in the past, but since he went into dialisis, things have changed, anyway, my currently situation is the following, he decided to stop going to dialisis, and this situation is very devastating for us, specifically me, as per I was the one that takes him and picks him up, and have all this journey with him, I feel like his abandoning me, he has expressed his tired and exhausted , I can’t to see him like that, I don’t want him to suffer, that’s my main concern, his last treatment was on Monday, it been 6 days, already, im freaking out, my grandma is in resignation, and the rest of the family, I can’t seem to do that, I have hopes he will on Monday, I know he won’t… im scared, really scared 🙁

  62. I have lived 40 years with Crohn’s Disease. Nearly bled to death 3 or 4 times when i was 19 years old. Got a colostomy in 1975 ,21 years old. Then got real sick in 1998, Dr. had me on tons of meds three years. Ended up having colon and rectum out in 2001.Got Sepsis 5 days after the surgery,flatlined in ICU because a DR gave me Phenergan, which WAS on my hospital admissions paperwork as being Highly allergic to! Learned i had Peyronies Disease the first year after surgery. In 2011, i learned my kidneys were failing because my urethra and kidneys had been damaged in the 2001 surgery. I have been on dialysis 17 months, i have gone from 197 to 170. I get so sick and dizzy,weak every time i walk out of dialysis, i say everytime i am not coming back. I hate living alone like this. My wife of 30 years left me ,she said she wished she had never married a sick person…How do i get the courage up to stop dialysis.I am ready to go, just scarred of having Sepsis again,and being horribly sick like i have been so many years.

  63. Cindy Schmidler says:

    Thank you for sharing your post. We are so sorry for your loss and celebrate the way you honored your mother and provided sacrificial care. Many can learn from you on how to love others based on the way you loved your mom.

  64. Valerie McGriff says:

    My mom just passed away from many chronic illnesses. COPD, diabetes, high blood pressure, heart failure & kidney failure. My mom stated diaylisis for about a month. Dialysis made her sick and weak. I respected my moms wishes and brought her home with Hospice. My mom died 2 days later Sept 14,14 in peace with no pain. I understand what your going through. My prayers go out to those that have to go through this.

  65. Cindy Schmidler says:

    Even though she may not know what is happening, I’m sure she trusts your judgement and is very grateful for your care over the many years.

  66. mildred wise says:

    I comment on this as I am sitting in my mom’s hospice room. Using my cell phone so excuse the shorthand. I am currently going through the same thing. My mom started her dialysis journy 6 yrs ago at 65 after a aortic anyerisum surgery took the use of her kidneys. The surgery left het able to make her own decisions and we lost dad to cancer at the same time with 31 days notice of pancreatic cancer. We have taken turns caring for mom ( 3 girls ) and it’s gotten to The point that her doctor said her quality of life decision needs to be decided. So 3 days ago in a closed room we sided with the doctor. I hope it’s as easy on her as it wad your dad. The fact that she won’t know what happening bothers me the most. Thank you for your post. I hope to find more with details. I wonder about the process and people like you fill my thoughts while I’m watching her sleep. It reminds me there are others.

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