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. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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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