Stopping dialysis

[Mydognala]

Hi all. Is there anyone who has stopped dialysis through choice? I am currently in talks with my team re stopping. Just wondered what any of you think.

[gilders]

Hi. I think you know what the outcome will be if you stop dialysis. I'd imagine it would be an extremely unpleasant way to die.

Hope that doesn't sound blunt, or uncaring. Please try to find ways that dialysis becomes a little more bearable.

[drturk]

I have been a dialysis physician for 28 years. Of course, I cannot say that I know dialysis from the perspective of a dialysis patient, but I have closely followed more than a thousand dialysis patients throughout my working years. And over many years I have witnessed advances in dialysis treatment. While the average life expectancy under dialysis treatment was quite short 30 years ago, today we have patients who continue their lives with dialysis for many many years. Yes, you are absolutely right; Dialysis is a difficult form of treatment. There are unavoidable aspects such as coming to a center three times a week and having thick needles inserted into your arm, but on the other hand, it is also something that definitely prolongs your life and allows you to live your life as you wish in the time you have left. Throughout these years, I have had many patients who got married, had children, loved ones, started a new job, or quit their jobs while on dialysis. As you know, with the developing holiday dialysis options today, it is possible to go to any country you want and spend your holiday under a warm sun that will warm you up. What I want to say is that I think life is something that continues with dialysis and we should appreciate it while we have it. Stopping dialysis is a slow form of suicide, which I think your doctor explained to you. Of course, the decision is yours, but why give up when you can continue your life as you wish in all the other times you have left aside from dialysis?

[CeeBee in reply to drturk]

I have been on dialysis for 30 years now and yes there have been some unpleasant experiences along the way but also many lovely times.

I have had a divorce, re-married, worked for 20 years before taking early retirement, played golf twice a week etc. Once you accept the routine of a dialysis lifestyle there is much to enjoy. I have been on 5 cruises with dialysis onboard and enjoyed holidays both in England and abroad.

Life can be tough but a strong and positive mindset will allow you to extract the good times from the situation you have found yourself in. Stay strong and fight.

[sbrenn01 in reply to drturk]

'it is possible to go to any country you want'

Hello Dr. Turk,

I'm not sure if you're in the US or not. I'm 65 and on Medicare; I've been on dialysis for about 3 years.

It's my understanding that receiving treatment outside the US or territories is not covered and that the pt is responsible for dialysis costs.

I so wish this was not the case.

[I844]

I have been on haemodialysis for 27 years. Sometimes its hard. Sometimes it provides a welcome break from life 'outside' with fellow patients who 'get it'.In my time I have seen two people choose to discontinue treatment. One was a frail old lady of 81, who had had enough. She died two days later.

The other was a young man in his twenties who couldn't deal with haemodialysis and always angry. He lasted two weeks without, although I believe he was not concious after the first few days.

People often ask me how I remain positive after so many years. My answer is always that the alternative is worse. I too have dark days but the sun inevitably breaks through.

[sylla123]

Hi Mydognala, My heart goes out to you and I just had to answer your post although just to go through it still breaks my heart with the memory ... My Husband of 51 years developed Rapidly progressive Glomerolnephitis, The immune system attacks the kidneys . With the wonderful team In Leicester General they kept him going without Dialysis for 12 years with quite experimental treatment and we enjoyed life to the full.

But then his kidneys couldn't take more and he started Dialysis. All was going fine his fistula was not quite ready so he had an emergency line just below his neck. One day he woke up early morning in terrible pain he couldn't move ! they had to give him Morphine to get him into the Ambulance I wanted him to be taken to the Kidney Hospital , but they insisted he went to A&E where they had no idea what was wrong with him and his Kidney specialist was away on holiday .... Three days later his specialist was back and I got a Phone call from her " What is Nicos doing in that hospital " I told her what happened and may be it was his muscles ? NO ! she said I know exactly what it is and treatment is urgent ! He has got an infection through his dialysis line which went straight into his blood stream and into his spine " Discitis " But there had been days of delay for antibiotics and the damage was done ...

He struggled on for the next 2 years on very strong pain killers , many falls as his spine was shattered ... The last straw was he fell and broke his femur bone .. his bones were now very brittle .. and he made his choice, no more Dialysis it was hardly working by now anyway . I asked the doctor how long would he last , he answered just a few days . It was 4 .. I felt it was his choice he had suffered so much in the last 2 years I had to honour his wishes .. The hospital gave us a lovely private room and we could spend as much time as we wished the whole family .. He was alert right to the last , when he called the nurse that he couldn't breathe . He asked her if this was it , and she answered , "no you are as bright as a button" .. she went to get a doctor and he was gone ........ listening to classical music which he loved ~~~~~~

Take care and be strong you are so young and be brave and hopefully you are not in pain and treat Dialysis as a gift Xx

[RonZone]

Hi Mydognala, hopefully you are reading some of the replies above. I also have PKD. I've been on PD dialysis since January 2023. I am very much older than you and have had these same exact thoughts. Each of us has their own situation to deal with. I'm still the primary caretaker for my 96 year old dad, so that keeps me going, as well as talking with all the wonderful people on this site.

I really don't know how much thought you have given to your current thought process, but since you asked for input, it would help tremendously to know more about your situation to offer any thoughts at all. Anyone who you would ask for this kind of input would need to get to know you very well before offering any kind of suggestions. So this is where you can decide to continue this discussion and allow many others to chime in once they know your particular situation better. Like do you have other co-morbid issues that you're dealing with like diabetes or other serious illness that might be contributing to your thinking. Tell us all that you are willing to tell, and the more information the better.

Next I would really suggest you speak with your social worker at the dialysis center and ask them to refer you to a very good counselor who will also listen to you, not making any decisions for you either way, but someone who can offer in person listening sessions where you can talk this through with a real person face to face over a period of time. Now you are more than welcome to continue speaking here, but we are definitely not in a position of offering advice or even suggestions at this point, and you could let us know what your counselor is saying.

We all will be at the point you are at some point, unless something makes the decision for us. So don't feel you are alone in this. You are definitely not. We look forward to hearing more from you over the next few weeks as you process through all this. Let us know you major issues with dialysis, other medical issues, and with your life in general, like special relationships with others you might have or issues with others, if you are willing. it seems you have a dog named Nana, correct?. We're here for you as best we can.

[Jk2023 in reply to RonZone]

Sorry I might of read or took it the wrong way but how would having diabetes and being on diaylsis be a reason why someone wants to come off dialysis ?? My mam has diabetes and I can't say she would give up on dialysis because of her diabetes?

[BiffyBeans in reply to Jk2023]

Some people get overwhelmed when they have co-morbidities, sometimes trying to control ‘everything’ and stick to diets, watching every single thing you eat, creates feelings of despair. Just because someone copes well doesn’t mean everyone does? We are all individuals and we don’t know the full story, so try not to judge. I think a Specialist nurse needs to provide/find/refer to counselling, getting into what really is going on.

[Jk2023 in reply to BiffyBeans]

I've not once judged ? I've just asked why diabetes would be a reason someone wants to stop dialysis

[Mydognala]

Hi all and thank you for reading my post.I was diagnosed with PKD in 2015 and all as well until 2019 when everything started to affect me. I have very large cyst filled kidneys that are very painful. I suffer from recurring cyst bursts and bleeding in my right kidney. I suffer from sickness and naseua everyday as my kidneys are squashing my stomach. All I've been offered is anti sickness tablets. I am currently losing weight rapidly and also lose of strength. I really can't cope with being in pain everyday. I take co codamol daily which gives me constipation and take oral morphine on really bad days. I hate taking this as it makes me spaced out and unable to function properly. I also suffer from fibromyalgia and cannot take anti inflammatory tablets due to my kidney disease. I could cry with the pain. I don't feel I have much quality of life. The decision to maybe stop dialysis has been a very long thought out and discussed process with my loved ones. Its easy for other people to say no you can't stop, you must carry on and live. But they are not me and not living my life. Dialysis is really taking its toll on me and unable to do much for about 24/36 hours after treatment. I've been told I only have a 40% chance of getting a transplant in the next 3 to 5 years( not the best odds!)and I cannot stay like this for that long. I have spoken to a counselor at my renal unit but it didn't change the way I feel. Of course I don't want to leave my husband and children but I also hate living like this. I don't know what to do.

[Jk2023 in reply to Mydognala]

Hello I feel for you and its awful that your even thinking about giving up on the dialysis my mam is similar age she's 56 also has kidney failure fibromyalgia she's also diabetic and loosing her sight due to her diabetes but she's always remained really strong and has family support which I'm sure has helped her a lot especially on bad days im sure you also have support from your husband and children. I can't begin to imagine how difficult it is as I'm not the one going through it but seeing my mam go through it she is the strongest person I know and I think everyone going through dialysis is super strong and brave. It gives you a chance to live and a chance to make more memories with your family yes it's terrible being in pain but there is better medication out there if the meds your on isn't managing your pain maybe it needs tweaked a bit. My view has always been the same I think it's selfish to give up like that on your family also yes it's not us going through it but to put family through that when you have a choice isn't nice there's people with no choice at all who die who would do anything to not die!! 40% is still a chance to get a new kidney you never know it could even be sooner ! Don't give up life is special x

[sbrenn01]

Hi,

I've been a patient in one form or another since the early 80s.

I have Crohn's disease and I have a number of surgical changes (a euphemism for 'I lost bits inside me here and there').

I am one who is engaged and involved with the whole End Stage Renal Disease process and dialysis, the idea of Homeostasis. I read everything I can to best manage the lifestyle.

Perhaps you could elaborate as to what aspects are the most challenging for you?

I pray you can get the upper hand!