How Long Does It Take to Die Once You Quit Dialysis?

[Zach]

Good to see you back, hurlock1.

 

[cariad]

Like RichardMEL, I am concerned about some of the people posting. I think there is a difference between wanting to stop dialysis because you do not feel well at all and have exhausted your options, and stopping because things in your personal life are not going well, or you are going through a rough patch with treatment. Of course I believe it is anyone's right to refuse any treatment. I do see it as suicidal behavior, but I am not looking at it from a legal or religious perspective, just from the technical definition of what constitutes suicidal ideation. I do not think of refusing dialysis as any sort of immoral act.

I am going to suggest an option to people who might feel they would benefit from discussing this with someone who will not shy away from getting into the real details of this issue. Please don't jump on me! If you hate the idea, then discard it. http://www.suicidepreventionlifeline.org/

I used to volunteer at one of these centers, so I can tell you that at least for SoCal, these people are well-trained and are genuinely concerned about the callers. It does come down to the luck of the draw as to whether you get a person you can relate to or not. I spoke to a few dialysis patients in my time there, and a few who were considering refusing other treatments that would be guaranteed to lead to death. And don't worry, I won't be answering the phone - I don't volunteer at one of their call centers anymore (there is not one near my current city).

[aharris2]

They say that they can get you dialysis anywhere, but when I go on vacation, I go away from population centers. Try to get dialysis at the Grand Canyon.

Been there, done that... in an emergency, unscheduled, snowed in at the Canyon unable to get back to Las Vegas in time.

So, go anywhere and do anything (then make it to your next appointment) and then go anywhere, do anything some more!

[Hanify]

Knowing how I felt before I started dialysis, I would choose a different way to go myself.  However, having said that, I think they do load you up with morphine etc, so hopefully you'd be out of it anyway.  I so am not going to leave this mortal coil as a blown up bubble of fluid!!

[Zach]

The other day I asked my doctor How Long Does It Take to Die Once You Quit Dialysis?  And he said, "I don't know Zach.  Why don't you try it yourself and then get back to me."

 

[dwcrawford]

oh, so this is the rest of the quote... mmm.  I didn't need that my friend.

[kitkatz]

DWCrawford, just come sit in the corner with the no transplant people and have a drink! Things will get better, I hope soon. I have had dialysis sessions that sucked and years where I did not feel right or good. \_/  Drink UP!

[dwcrawford]

I know Kit.  You and Zach are right.  I really try to be positive about this.  Really I do, but I slip now and then.  Dialysis really isn't that bad.  I'm just looking for perfectioin.  And then I think, "what a great long life I have had so I need to be thankful for which ever way it goes". 

I really do like myself when I get this negative.  It is over   (for now anyway).

[jessup]

I really feel compelled to answer your thread question
Having just recently watched my father pass away
He had no kidneys for one year

It took 5 days for Dad once he stopped dialysis
It was bloody awful
There were times when he definitely wasn't sleeping - uncomfortable, rls, hot/cold flushes etc

Once medication was given a lot of the symptoms were not noticeable
However
He did not just die whilst sleeping
He kept gasping for breathe

It was bloody awful
But he is now at peace
Thank God

[willowtreewren]

Sorry you had to experience that with your dad, Jessup. 

[Des]

To celebrate the three in a row worse days on dialysis I goofed around a little this morning to avoid  in inevitable for a little while.  I just thought it might be appropriate to ask something people who are seriously considering it rather than read in the newpaper, etc.  No slight meant.  But I had just asked my nephrologist and my internist the same question yesterday so it was fresh on my mind.

How long it will take? don't know but this is how it will happen.

This is the stuff that is happening in your body when your kidneys fails. If you decide to do nothing this is what will happen inside your body...., since your kidneys cannot filter out the potassium you consumes fast enough, it will cause your heart to beat irregularly. If you have lost the ability to produce urine, your vascular system will become flooded with fluid and your heart won't be able to keep up with the increased volume. That increased volume will also collect in your lungs making it difficult to breath, depriving your heart and brain of oxygen. Your kidneys cannot filter out the urea your body produces, which will result in toxemia, rapidly damaging your heart, brain, and other vital organs. If you live long enough, the phosphorus that your kidneys can't filter out, will absorb into your aorta, and causing it to calcify and harden, making it harder for the heart to supply itself with oxygen.
Dialysis prevents all the above life threatening effects by removing the harmfull toxins in your body. If you do not qualify for a transplant or choose not to have one DIALYSIS is the only option you have if you want to stay alive.

Someone here said that it won't be painfull........ I think it will..... Not being able to breath.......

Jessup.....
I found the above research ... I was hoping it was not completely true about being short of breath..... but it seems it is the way it will happen..... Oh MY!?

I am sorry that your dad suffered......like this.

[cariad]

jessup and cyclops, I am so sorry that you both had to watch your fathers suffer. Thank you for posting this valuable information.

I feel that some of these articles inadvertently romanticize this choice, and that bothers me. Saying it's "not usually" painful when two different members have indicated that their experiences were the opposite is distressing to say the least. I know if I were told it was probably not going to be painful, and that I would likely die in my sleep, and I instead lingered in agony for days, I would die thinking "those bastard doctors lied to me for the last time". (By the way, I really like most of my doctors now, but this was an entirely different story when I was a kid, and I still distrust the profession.)

I became fed up with everything about five years ago and told my GP a few times that I did not want another transplant and I would never accept dialysis again. He said "Let me tell you what no one else is going to tell you. Here is how this will play out." If I had known he was going to react that way, I would have brought a tape recorder. It was extremely detailed and gruesome. I have never said a word about refusing dialysis since....

[dwcrawford]

Of course no one can tell you the pain of dying from anything and I doubt there is really an easy way.  I was simply relating what was told to my by my nephrologist which may or may not have been based upon some specific situation.  Unfortunately we, myself included, tend to want to lump all situations into a neat little package we can wrap up and put on the side until we need it.

I too am sorry for the loved ones people had to watch suffering.  Reminds me so of my own father dying from emphysema and my dear friend dying from cancer.  If only we could pick when and how, hell, and why not even pick "not to".

[okarol]

 
Someone asked me about this - here's the thread I was talking about.
Sometimes the search feature comes back with a lot of results so try searching a couple different ways.
okarol/admin

[RightSide]

I imagine that once you quit dialysis intending to die with dignity, you should also quit your renal diet.  A renal diet is so restrictive in phosphorus and sodium that you could certainly eke out a few more months on it.

[Epofriend]

Yes, we talk about how bad potassium is, but this would be the time to take advantage of it - sudden death from electrolyte imbalance.

It sounds like fluid overloading makes this death horrible, unable to breathe drowning in your own body fluids.

[Golferchick]

For my dad it was 8 days from the time dialysis was stopped. He was in a hospice and they were wonderful. I highly recommend hospice.

He could eat anything that he wanted (kept pushing ice cream). He was peaceful and at rest during all of it. His last 2 days he was given morphine but at that point he was in more of a coma but still hearing what was going on (that is what they told me). He was not in any pain or uncomfortable. It was one of the saddest things I have experienced in my life, but I understand the hard decision this was for my mom to make (my dad was ill since September).

[gothiclovemonkey]

my dr told me about 2 to 4 weeks as well, and i tried skipping D for 2 weeks. I dont agree that its the best way to die or that its not painful. I was miserable. I couldnt breathe at all, i was throwing up, had terrible diareaha. I couldnt sleep. It was terrible. I went to the hospital and had emergency dialysis and resumed doing dialysis. That being said, I do pee sometimes, about 1 -2 times a day, so thats probably why it didnt kill me. I didnt take my meds, or follow my diet at all duing that time either. (if id known about the star fruit, i probably would have tried that...sadly enough to admit...)
I dont think stopping dialysis is a good idea, but i could see why people wouldnt want to do it anymore. Lucky, I found my reason to live. Hes 4ft tall 38lbs and the cutest blue eyes ever made. my six yo boy. Hes the only reason i do this. I wouldnt be doing it, if he didnt exist.
My mother was told she only had months to live, when i was BORN. I was 12 when she died. Doctors dont know. When it is ur time it is ur time. Perhaps one person could live years without dialysis, even with the need. Others only days.

[Hazmat35]

be positive Gothiclovemoney!  Dialysis sucks, but it is far better than the alternative. 

When my mom was on Dialysis she was so sick everyday afterwards.  It was horrible.  I took care of her, and i told everyone that if it ever came time for me to have to do Dialysis, that I would never go though it!  That was 12 years ago, and mom has sinced passed away (11 years ago).  And here I am, stuck to a freaking machine 3 times a week!

Remember . . . if it doesn't kill you, it is suppose to make you stronger! 

[gothiclovemonkey]

never say never huh hazmat

im much more positive now, but i have my moments, we all do.

[Dianejt]

For Frank it took 8 days from last dialysis session to his passing. He did have other problems. 5 days with no nutrition as we stopped the TPN so he wouldn't get fluid overload & breathing problem. Hospice was great about helping with medicine for his pain & secreations control. He slipped into a uerimic coma on day 5. I know he was comfortable & pain free and peaceful.

[ClarkWard]

Thank you all for these very helpful and informative posts. I've learned so much. Thank you.

[RainingRoses]

My mom had a transplant in 84. It completely failed in 99;  she refused dialysis and lived about 3 days.  She was 73 with multiple health problems from the years of Imuran and prednisone.

[Cordelia]

I don't really think there is 'any' specific time frame, I think everyone would vary from person to person at least from what I've read and my understanding.

[our last breath]

I have asked that question so many times and NO ONE can answer that..  My husband has been off treatment for over 42 days now..He is feeling better then he has in a year. NO PAIN... He sleeps off and on ,   he gets puffy up one day then the next back to normal.  His blood count has been good .   There has been days were I didn't think he would not make the night because of the glossy look in his eyes,  his breathing pattern..  then the morning would come and he would seem better... He doesn't eat or drink much. But I think that is more out of habit.  We know it will change but for now we are grateful for every day.   I send you my best....Remember everyone is different..