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.

Comments

  1. 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.

  2. 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.

  3. 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..

  4. 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.

  5. 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?

  6. 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.

  7. 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.
    jenn mandy25@kent.net

  8. 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.

  9. 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

  10. 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 :-(

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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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