Stopping Dialysis: how long before The End?

Getting bogged on a muddy road is not normally a life-threatening situation.  Unless you are driving 475km (300 miles) for dialysis on a muddy dirt road after floods.  A guy in the Queensland outback was doing exactly that three days ago, travelling from Mt Isa to Doomadgee Hospital, a nine-hour trip.  He and three companions, including his son, were travelling along the muddy Thorntonia Rd, a 56km (35 mile) stretch about half way there, when they were hopelessly bogged.

They spent the night in the car waiting for someone else to come along, but nobody did.  They began to worry about the man missing dialysis, now one day late, so early morning two of his friends, a 33-year-old man and a woman (age unknown) decided to walk to the Gregory Downs Hotel 40km (25 miles) further along the road to Doomadgee for help.  They walked all day along the muddy road in persistent rain until they arrived after nightfall.

The hotel staff called the North Queensland Rescue Helicopter, which the following morning picked up the man and his son and took them to Century Mine, 25km away.  From there, the man, now two days late for dialysis, was taken by Royal Flying Doctor Service about 1000km east to Townsville Hospital, where he at last received his BigD treatment.

A great story eh?  His friends must have been really worried.  Should they have been?

Absolutely yes.  Another day or two and he would almost certainly have died.

I have often wondered how long I would have if I stopped dialysing, so I asked our Unit Manager, who has known several people who have decided to stop.  Her answer was immediate: three to five days for most people.

The length of time depends on a few things: whether you have any residual kidney function (I do not), how well you tolerate too much potassium, which causes increasingly severe arrhythmia (irregular heartbeat) and how well you can tolerate the fluid build up (which makes it hard to breath and places great strain on the heart).

The high level of toxins are an unpleasant extra that tends to slow down your thinking and make you feel generally unwell.

Eventually, death is usually caused by heart failure.

Most people on the BigD have had some or all of these symptoms, so they are not all that hard to imagine (I have some pretty ugly photos of me to prove it).  But luckily we have had dialysis available to get us back to some semblance of good health.

To me, this Queensland story is a useful reminder to make doubly sure of my dialysis treatment plans when I go on holiday, or if I travel far from my unit.  It’s the kind of frustrating situation I sometimes dream about, where no matter how hard you try, you can’t seem to get where you want to go (I must remember to dream up a helicopter or the RFDS next time!).

It is also a nice reminder of just how great it is to have good friends.  Yet another reason to hang on to life with both hands.

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20 thoughts on “Stopping Dialysis: how long before The End?

  1. I disagree with the statement 3-5 days without BigD means curtains. Recently my sister spent 5 days without BigD. A long story, but in short she was admitted to hospital, but literally waited that long until the staff dialysed her. She was no where near death.
    I can also relate to a story written by an old chap called Boris (not his real name), who decided to cease BigD. The Drs told him it would be weeks until he finally died, peacefully. They advised him that he would become slower and slower until at last he would just drift off to sllep and not wake up. It is a very moving story, written by Boris until near the end when a friend takes over. But the point is weeks, not days for anyone stopping BigD

    Chris from Dundas.

    • Hi Chris, thanks for the comment. I agree that not everyone passes away within 5 days. It depends on each individual, their state of health and what else is wrong. An otherwise young and healthy person would last longer, but an older person with several other health problems could go quite quickly (and this is the type of patient that most commonly chooses to stop). Also, some of my BigD friends feel dreadful after four days off, others seem to handle it well. I hope not to have to put it to the test.
      I would love to read Boris’s story. Is it available online or as a soft copy, or where could I see it? Regards, Greg

  2. My dad just missed 2 treatments which landed him in the hospital his potassium was high enough to kill him. We all thought he was going to die.
    I’m pretty certain if he didn’t go to the hospital when he did he would not be here today. It was 6 days without dialysis one more would have probably killed him.

  3. Hello friends, I just went through this, “stopping dialysis” with my mom and she lasted exactly 20 days. She was 78 years old with numerous other complications. So… I truly think each person is different and how the body handles the toxins is the key. She had been skipping treatments for over a year because she would get so sick after dialysis that finally after her last treatment on December 31, 2011 she just decided she did not want to go back. She passed January 20, 2012.

  4. My Mother has just passed away, after taking a bad turn during dialysis the doctors decided her body could not take any more so they withdrew her dialysis, 5 painful days later she passed away, towards the end her breathing was so laboured i wanted the hospital to give her something. she did sleep most of the time but it was painful to watch her slip away like that, she was 81.

  5. I’m watching my mother now go through her end of days after stopping dialysis, and it’s hard. I was told that she wouldn’t feel much pain but that hasn’t proven to be tru….her breathing is eratic….she’s having bad mucle spasms….and trying to move her from side to side or even change her is very hard because she screams out in pain

  6. she stopped her dialysis dec 3…..was given a blood transfusion on dec 11th and is still holding on but watching her succumb doen’s seem to be pain less but she also has HIV so i don’t knw what effect that has on the whole process…..

  7. After 5 years of being sick, 3 of that spent on hemo-D which was extreamly painful I went on peritoneal-D. A month ago I began vomiting . This happens several times a day. I cannot even smell food. My stomach has become distended and very hard, it is hard to breath. After 2 months I have made a decision to stop “The Big D”. I do not know how long I have but am using the time left to prepare my family. Yes it is hard and I am scared but all the continual pain and vomiting are too much. I will have hospice care, I hope it is not a long wait. I have other illnesses as well. I am 63 I am hoping I will just go to sleep. What are some of the more painful aspects of passing from ESRD? Can anyone answer Thank You

  8. My Mom was on dialysis for 14 months. For her, her quality life was almost zero. This past November, after missing Thanksgiving dinner with her family, and her grandson’s wedding because she was so sick, she decided that was enough. She only missed one treatment, She stopped on Monday, Nov 26, 2012, and died on Thursday morning, Nov 29, 2012. She was in a state of restlessness the night before she died, but it could have been so much worse. Love you Mom!

    • Hi Don. Thanks for letting us know. It is a decision most of us BigD-ers will face at some time. Many of the people I have known who have stopped dialysis seem to have come to terms with their decision and have taken the time to say goodbye. It is hard the family left behind, but as you say, it could be so much worse. Greg

  9. Plain and simple: I’m 5’2″ 120#s no kidneys, very high BLOOD PRESSURE, 200’s / 150’s, but felt good, access broke, missed D-day, called hospital next day ( Kansas University Medical Cent.) next day, they said the knew nothing about it, they would call me back, they never did. I called the next day with some not so nice F words, we are looking into it, I told them I’m not feeling well, long story short I landed in KU’s ER, with the head of Nephrology at my side. This was the coolest very old Doctor, cussing out any ER Doctor and staff should not be in my unit. I was there for maybe an hour and starting to slip away, where I was going I couldnt tell you, coma or death, but this is how I felt. I was very tired, short of breath, but not fighting to breath, then I couldnt move, I knew in my mind I was full of poison and that this was my time AND I would be a very rich dead man, thanks to KU. But they ripped my thigh open and dialized me, hence they brough me back. UGH I’m still deciding to sue or not ? Their fault not mine, but on the other hand they saved my life, yet had HUGE BALLS to send me a $30K bill, which my insurance co. didnt pay. All in all I think thats how I will die, if this kidney gives out, I’m 50 next month, this is my 2nd transplant, time to move over and let the younger ones take over. I will go on dialysis until my estate is taken care house is sold and fine a home for my German Shepherd, then I will go to hospice after stopping dialysis and end there….Plain and Simple

  10. on the big d 4 times a day at home got really upset today why me and could have thrown the bags up the garden and like to miss a day but that would be wrong and not good for my health does anybody else feel depressed and upset or is it just me my family is great but its me doing the pd not them thanks claire

  11. i amso upset with my mom…she is 75 and misses dialysis regulary,,when we talk to her aqbout it she gets mad and says she don’t want to hear it.. she has many other health problems and I wanna know how others out there handle it when their loved one refuses to go to dialysis….

  12. Hi all I am sitting here with my mom in hospice she stopped dialysis on wed the 4th she is 82 it has been hard watching her slip away . She is not eating or drinking I think her urine was bright red they would not let me see and her oxygen level was 171 can any one help does that mean the end is near? I just want to know she won’t suffer much longer.

    • Hi Sherry. It is different for each individual, depending on how healthy they are and if they have any residual kidney function (your mom obviously has some if she is producing urine). It can take from a few days to a week or more. It’s now 4 days since your post. It may have already happened. If not, I’m sure it will be over quite soon. Peace be with you both. Greg

  13. My mom was on the BigD for 3 years – she tolerated it – can’t say she enjoyed it :-)
    She lost a substantial amount of her independence, she had BigD 3 x a week and was wiped out afterward – in her 70’s – so the rest of the time she had to rely on my dad to take her where she wanted to go – or one of us – or if it was close she drove – driving was good since her reaction time was slow.
    She decided to quit after a month stay in the hospital – pneumonia – and they – dr.s – wouldn’t allow her to go home – too weak- she’d ask too go home she hated the hospital and I tried to get her home on hospice – to improve her spirits – she was so depressed.
    It was not taken well by family. – eventually she decided to quit the BigD – she went home with hospice care – stopped most of her medications – ate whatever she wanted – small portions – was in a weakened state – but today is day 20 no BigD.
    I used to go see her regularly at the center spend time with her, just talk with her about stuff.
    The staff were fine, but the surroundings were very depressing. People were brought in on gurneys – amputees – legs mainly, others looked like they were barely existing – there were those who were there and dealt with it well – few.
    It gave me a perspective that I personally wouldn’t want to be there – I’m sorry but it affected me – I try to exercise and eat right and do whatever I can – I know sometimes thing happen – I’m conveying my own thoughts –
    I was sad – depressed at first she decided to quit – but then I applauded her decision. She said she didn’t want to be told what to eat, sleep etc – like when she was in the hospital anymore – not to mention the fact she wasn’t allowed to go home when she wanted to.
    I told her she would die – she told me we all are gonna die one day.
    Like I mentioned she’s now on day 20 – my sister – who is caring for her – mentioned my mom said she doesn’t think she is gonna die – cute – one day as she told me.

  14. Interesting article. My mom just passed away after only 4 days without dialysis. Her potassium was high and her heart stopped. She was only 51.

  15. My sister had been on dialysis for 2 and a half years due to metastatic kidney cancer. She had one kidney removed in Oct. 2002 and a year later it spread to her liver. Eventually it also spread to her remaining kidney, pancreas, and lungs. A few weeks ago her doctors stopped dialysis because her BP had been running 60/40, her oxygen level was 82, and she had a large lung tumor starting to obstruct her airway. From everything I had read we expected her to last 7 to 10 days. It is now day 19 since her last dialysis and she is still alive. She’s been on hospice at home. She is semicomatose but does respond at times. She hears things we say. She was eating very little even before they stopped dialysis and ate only mouthfuls the first 10 days. She has had no fluid for 5 days. She is 69 years old. She’s had stage 4 kidney cancer since 2003. She had so many tratments for the cancer I couldn’t begin to list them all. At diagnosis in 2002, they gave her a 5 % chance of living 5 years. It is now almost 12 years. She has had no kidney function, no urine output for at least a year. I write this because she is another I think rare case of someone who has defied the odds and gone on so much longer than predicted.

    • Thanks for this post Madeline. Your sister’s story is an amazing. She is obviously a real fighter. Greg

      • My sister died later on the day I wrote that post. It was actually 20 days that she lasted without dialysis. I can’t say it was such a pleasant death as we had read about beforehand. She did get sleepier and sleepier but the last 3 days were rough. She didn’t just fall asleep and not wake up, but struggled quite a bit at the end.

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