Declining dialysis

[retrorod]

Because I am a very pessimistic bloke, and without much enthusiasm for the future, I have weighed the possibility of declining dialysis when it's offered.

I accept this would be a selfish and cowardly act, but we all have to die sometime, so why not grab the opportunity whilst it's here.  Whilst all Christians are enthusiastic about going Heaven, few wish to die.

Perusing the lifestyle and dietary restrictions of many on dialysis, I have not been greatly heartened at the prospects of enduring this prohibitions, possibly for a decade or more.  Whilst I am not by any means ruling out a change of heart, my present mood is that it just seems to be a whole lot of trouble, with no certainties involved.

My GP suggests a body might last months without dialysis, and less if further medical assistance is denied.

Does anyone know of cases where dialysis has been declined?  How long did the patient last without it, and did they suffer immeasurably? 

[Henry P Snicklesnorter]

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[MaryD]

I agree with HenryP.  We have it really good in Australia. 

I am on PD and it has improved my life and outlook on life greatly.  I can eat just about anything I want, and I suspect my age is probably as much a reason as my kidney failure in my not gallivanting about as much as I used to.  For me life is very good at the moment.

I you decline dialysis at this stage, you will feel more and more revolting for months or even years (depending on the rate of your kidney decline).  If you start dialysis and keep it up till you have no kidney function at all, you will feel much better physically, and at that stage you could decide to stop, making your exit from this world much quicker and more comfortable.

My EGFR Hung about at 25 - 30 for 5 years and took another 3 years to sink slowly to 10.  Your  EGFR is about 30 (?).  Yours decline could be the same.

I can thoroughly recommend PD.  Give it a whirl.  It would be a shame not to.

[noahvale]

^

 

[del]

My husband has been on dialysis for 17 years now.  We live in Canada and have basically the same medical program as Australia.  There have been a few bumps along the way (mostly when pd stopped working).  He enjoys a rich and full life where he does everything he did before dialysis with the exception that he has more energy to enjoy it now.  He has very little fluid and food restrictions doing 7 hours a night 5 days a week.

[MooseMom]

Please take noahvale's advice and check out Dr. Agar's sites.  The man is brilliant and is a tireless advocate for renal patients around the world.  You are incredibly lucky that you are in Australia because the way dialysis is practiced in the US is barbaric in that it is all done for profit.  While it is terribly bad luck that your renal function is declining to the point where you are having to think about dialysis, you have great good luck that you are in a medical system where you don't have to waste precious energy in fighting the government and/or insurance companies.

I have read stories here on IHD where people have stopped dialysis, and their level of suffering varies.  I would recommend hospice so that at least you won't suffer.  I guess it depends on whether or not you have other health issues.

That feeling of hopelessness is massively crushing, so you might want to look at this site...

http://www.rsnhope.org/

While I love IHD and think it is a wonderful site for support and information, I am not sure it is the best place to look for hope and cheer because, as Henry P rightly pointed out, people don't post here to tell us how much they are enjoying life on dialysis and long may it continue!

If you do home dialysis, you will be able to dialyze more often.  Common sense should tell you that the more dialysis you get, the fewer the dietary restrictions.

Good luck to you.  Please don't give up just yet.

[jjneyjr]

Yes, I have refused dialysis. I have lasted a total of 43 - 44 weeks but the writing is on the wall now. The doc gives me less then a month and boy am I sick. Could not sleep at all last night because I felt like throwing up. If you enjoy that feeling that you could ralph any moment you will love this way to die. I blame hospice for me being that sick because they have been reluctant to take me. They want to make sure I am dying and not trying to scam them. All I can say is how little they know. There is nothing you can do short of hemo, pd, transplant or death. Those are your options.

I am a nihilist so death is a part of life for me. There are no religious connotation's as far as I am concerned. I have given all my stuff away to my heirs and was ready to die except for I would be burdening my little brother because he has been kind enough to take me in while I finish waiting for my disability. If I die within the next month he is out monies and that is just plain not right.

So, Monday, is emergency dialysis day, the neph knows they wont be allowed to put in an AV fistula or graph because I will refuse it. They only have one way which is my way or the highway. Hemo through a permcath until my numbers are good enough for the installation of a PD cath and PD or death. That is their options given to them by me!

So, everything you have read about silent death take it with a grain of salt. It is not a cool way to die.

Cheers,
J

[jbeany]

Retrorod - deciding not to start life support is neither selfish or cowardly.  It's simply a choice - and whatever you decide, it's YOUR choice.  I know people on here who have long, happy, and productive lives on dialysis.  I've met others who were constantly sick and miserable, and stopped treatment because the bad days far outnumbered the good ones.

I always encourage anyone who is thinking of stopping or not starting to get counseling.  Make sure you aren't making a decision from the bottom of a depression that can be treated.  Still, plenty of people do choose not to start or continue.  My grandmother refused to even consider it.  She was in her 90's, and thought going on life support was idiotic at that stage in her life.  I chose to go on in my 30's because of the possibility of a transplant.  I've received a kidney and pancreas, and it was well worth the wait, the miserable diet and lifestyle restrictions, and the problems and complications that came with dialysis and my surgical transplant complications.  I didn't do it for any kind of religious reasons - I just wasn't ready to die.  I looked at the treatments as hoops I had to jump through to get the transplant.  Some people without hope of transplant look at them as what they have to do to enjoy everything else they do.

IHD was started because the founder, epoman, was frustrated at not being able to post the TRUTH about dialysis on corporate sponsored support group sites without getting censored.  Whenever he posted anything negative, it was deleted.  He set this up to let people talk about the good, the bad, and the ugly.  The name was chosen partly because of the shock factor, and partly because, for all of us, at some time, we do hate something about dialysis.  It doesn't mean we aren't grateful for the chance to live - it just means we are frustrated with the details.

  Epoman also started a sister site about how much he loved his treatments on NxStage.  He did love the control and freedom the home hemo system gave him.  He raved about how much better it worked than in-center, and how he preferred being the one in control of his own treatments.

You have to remember that the site seems heavy on the negative side because when things are going really well and there aren't any problems - most people don't post about it.  They are too busy being happy!  Check out some of our off-topic sections if you want to know why people start and stay on dialysis- they are living for the stuff that happens when they aren't on the machines.

[kiddogal]

You are neither selfish nor cowardly - it's your body and your life.  My husband SWORE for 14 years he would NEVER go on dialysis.  (he had a heart transplant in 1997 and knew that eventually the drugs given to prevent rejection would eventually destroy his kidney function) Well, the day came in April 2012 and when my husband was told he would need to go on dialysis or die soon he was like...."When do we start??"  He is feeling better on dialysis, not nearly as fatigued as he used to be, but it's not a cakewalk for sure.  Once everything settles down, it's not the worst thing in the world.  He eats most anything he wants (his lab work always comes back in range so he feels as long as it is in range, he does not restrict himself too much).   Fluid restriction is his biggest problem, but for the most part he has adjusted well.  My husband's GRF was hovering around 15-20 for the last 4 years until he went on dialysis in April 2012.  Hopefully you will still have a lot of time before you are faced with the decision to go on or not go on dialysis.

[retrorod]

Thank you all, sensible and thought provoking replies they all have been.

Taking into account some of the comments you have made, I am certainly going to sit on the fence and, whilst the notion of letting nature have her way may have some attraction, I am not ruling out accepting dialysis by any means.

I do suffer from depression, and so this health challenge, on top of others, has left me feeling less willing to step up to the plate and look the matter straight in the eye. Unlike my terrific wife, I have little of the tenacious fighter in me, that she has.

So, for now I shall continue to ask the questions and make no final decision until all the info is in, including a period of dialysis.  The very thought of having shove tubes into myself, leaves me quivering mess.  I once saw a diabetic self inject, that was enough for me. 

Thank you again one and all.  RR

[amanda100wilson]

ok, here are your options:

PD: requires insertion of catheter placed into the abdominal wall.  Easy to use.  does not require care partner.  Infection is main risk.  Finite life for use (although this can be many years) as efficiency of peritoneum declines.  A great first-time dialysis, particularly when there is residual renal function because it helps maintain this for longer.

three times per week, in unit hemo - needs fistula, graft or catheter.  catheter is least desirable because of infection risk.  fistula needs to be done ahead of dialysis as it takes weeks to months to mature.

daily home hemo-  gives better outcomes than above.  I feel great on this.  Like the flexibility that it offers.  requires commitment, and a care partner is usually required for training by dialysis training provider ( although care partner can be dispensed with once hoops have been jumped through). for me, this id he way to go


have dialysis to ultra-filtrate (remove fluids) only.  If carried out in a hospice, other symptoms can be dealt with too.  From what I understand, you gradually lose consciousness.  This sounds to me he easiest way to go, if that is your choice.

take no action and let nature take its course.  You may linger on for a very long time.  Once you reach the stage where dialysis would intervene, you would start to feel really ill, with nausea and vomiting, probable severe cramps, itching, swelling up, increasing cognitive decline.  It can go on for a very long time.  there was a man on here recently made the choice to not have dialysis.  He lasted for months but him and his family went through hell. 

hope that you will decide to give dialysis a try. However, I don't think that you are cowardly and selfish, if you decide that dialysis is not what you want to do.  It is mot for everyone.  Remember, in particular, no-one that has not been faced with this decision has any right to judge you. 

I do urge you to get some he with your depression.  It really does have an impact on how you view things;  I know, as I experience depression from time to time, too. particularly when there are significant changes in my life, such as starting dialysis.  Please feel free to Pm me if you wish.

[Henry P Snicklesnorter]

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[amanda100wilson]

applogies, my mistake

[jeannea]

I'm not clear what the exact reason is but here in US you can't have home hemo if you live alone. Is it government regulations? Fear of lawsuits (prob)? Some weird lobbying group? I don't know if we've ever gotten to the bottom of this. I thought the FDA wasn't allowing it but there were vehement reactions to that.

[cattlekid]

Probably because of our lawsuit-happy society. As my neph said, there isn't enough paper in the world to cover his ass if something would happen to me while dialyzing alone.

I'm not clear what the exact reason is but here in US you can't have home hemo if you live alone. Is it government regulations? Fear of lawsuits (prob)? Some weird lobbying group? I don't know if we've ever gotten to the bottom of this. I thought the FDA wasn't allowing it but there were vehement reactions to that.

[lmunchkin]

I suspect you both are right.  It is ashame though, cause there are some here, that are perfectly capable of dialysising on their own.  But due to rules and restrictions, they can't because they have no training partner!  That is sad beyond belief.  I would seriously open my home up to do NxStage & partner with clinics, to supervise them till they learn on their own.  I can't believe they won't allow that.  It's not their lives in the balance here, for God's sake!

If Iam willing to make that commitment (without being paid) I dont understand why they wouldn't jumb on that.  World is full of Nutty People. You go figure.....

God Bless,
lmunchkin

P.S. Going to bed now.  Hope to be back 2morrow!

[Grumpy-1]

After reading what everyone had written, I would say you have been given some great advice and information.  I think I can say for everyone on Dialysis - we have all had thoughts of just quitting and let nature take it's course. I know I have and still do every so often.  I think that is part of the game.  We feel down - both physically and mentally - and that is normal.  It sounds like you haven't even started on dialysis and thinking about quitting. As said that is your choice and no one here would condemn you for making YOUR choice.  However, I would say when the time comes for dialysis or not, give it try first.  From the moment your kidneys declined, you were put on this road. Dialysis won't change that, it won't make you feel like you did before. It will keep you alive and even if you do get a transplant, your life has been changed and you will never get it back.  FACT of LIFE.  If you understand that and comes to grips with that, then you have succeeded.  Yes - many here post negatives and moan and groan about it, but it also helps others here.  I think I've rambled on enough, but it is your choice.  Grumpy

[Dman73]

Give Dialysis a chance!

It's a shock for a new patient to adjust with all changes that occur mentally & physically from being healthy, feeling the effects of a loss of kidney function and ending up on D (the same thing occurs with the loss of a transplant as well).

Over time you adjust, learn a system to cope and finally you can improve and get stronger through diet & exercise (walking, swimming & exercise bike). After you build your strength back you can work full time and dialyze in the evening. I know because I have done all these things for years and over time it all becomes routine.

I noticed on the Fresenius website that they offered the 'Staff Assist Program" which allows you to have treatments at home with one of the center's staff which is good for someone without a partner. I am checking with my unit now to see if it is available.

http://www.ultracare-dialysis.com/FreseniusMedicalServices/UltraCareAtHomePrograms/UltracareAtHomeStaffAssistProgram.aspx   

[Alex C.]

I'm not clear what the exact reason is but here in US you can't have home hemo if you live alone. Is it government regulations? Fear of lawsuits (prob)? Some weird lobbying group? I don't know if we've ever gotten to the bottom of this. I thought the FDA wasn't allowing it but there were vehement reactions to that.

Doing home hemo solo is a really bad idea, because if you fall asleep and start to leak, you can bleed yourself to death in less than 10 minutes.

[jbeany]

Doing home hemo solo is a really bad idea, because if you fall asleep and start to leak, you can bleed yourself to death in less than 10 minutes.

Actually, someone nearly did that at my center while I was going there.  She was sleeping, the blood pooled under her chair out of sight, and she nearly died from blood loss before the staff noticed it.  So, no real safety from that risk with a trained staff either.... 

[Desert Dancer]

I'm not clear what the exact reason is but here in US you can't have home hemo if you live alone. Is it government regulations? Fear of lawsuits (prob)? Some weird lobbying group? I don't know if we've ever gotten to the bottom of this. I thought the FDA wasn't allowing it but there were vehement reactions to that.

Doing home hemo solo is a really bad idea, because if you fall asleep and start to leak, you can bleed yourself to death in less than 10 minutes.

You will find many here who take violent exception to the thought that one should be denied their choice of modality because of their relationship status. That is as downright infantilizing as it gets. We are not children here and we are well aware of the risks. I, for one, would likely call in hospice if I were to be forced in-center for loss of a care partner and it would not be a bluff on my part. Is that better than assuming the risk of doing it solo?

Maybe it's just that Australians and Japanese don't bleed out. Maybe it's an American thing.

[cattlekid]

If that is a risk that I am willing to take, then I should be allowed to make that choice for myself. I agree with Desert Dancer, it is only because of our litigious society that we are not freely given that option without a,lot of struggle on our part.

I'm not clear what the exact reason is but here in US you can't have home hemo if you live alone. Is it government regulations? Fear of lawsuits (prob)? Some weird lobbying group? I don't know if we've ever gotten to the bottom of this. I thought the FDA wasn't allowing it but there were vehement reactions to that.

Doing home hemo solo is a really bad idea, because if you fall asleep and start to leak, you can bleed yourself to death in less than 10 minutes.

[RichardMEL]

Mate,

I understand you suffer from depression and this can impact on your decision making - and you seem aware of that. I know you're in oz, but sorry I didn't check your age before I started this reply. Regardless of that I  still offer my comments.

I absolutely respect YOUR right to make YOUR choice for YOUR body and it does seem that our system will support you (along with badgering you) whatever decision you make. I believe in everyone's right to make their own choices, but to also take responsibility for them and accept the consequences. Obviously you're aware of all of those.

I still think you should give it a go. Often the fear of that unknown - of how YOU will cope, of what it will be like, and so on can be worse than the reality. For myself, while I had years to "prepare" for it, it was still a big change for me. There's no doubting that.

There's also no doubting in my experiences, and those of several others here - and fellow aussies like MaryD and Henry P that dialysis, in whatever mode, doesn't mean "the end" or even a situation where life is not worth it. It doesn't have to be like that.

Of course, everyone's personal situations are different and it's easy enough for strangers to sit here and write what we think, but we're not you and we don't know your specifics - if you're working or not, family/partner situation etc - and all those things can impact on many aspects of this choice - from if to do it or not through to what modality to choose.

For me, I could not attempt PD or home hemo because of my poor eyesight and lack of co-ordination (and at that time - 2006 - you did need a partner to help with home hemo, and my cat would rather sleep so.... that was not an option). I did hemo at the hospital 3 times a week. I did it Tuesday/Thurs and Sat afternoons.

I want to comment on the dietry restrictions - EVERY case is different!! I have friends who did/do hemo like I did and had no apparent restrictions because they had good output, or their levels were controlled well - your situation may mean less restrictions - or more - every case is different and it may well change as you progress down the dialysis path (if you make that choice, of course). And as others have said, if you can do PD, your restrictions will be much less - I believe it is generally nil fluid restrictions and very little in the diet - though others can clarify on that further.

I kept my job going for over 4 years while I had that routine. It is true I have very supportive co-workers and management, and they just worked out to not hold meetings on my D afternoons (or hold the secret parties when they discussed the best ways to pile work onto me!! ) but I pretty much was able to work with little interuption. I could even contribute when I was "in the chair" if there was some emergency situation and they could grab me on the phone and ask for my input or whatever - fortunately that was rare

I won't say dialysis is paradise or anything like that, but it can be a part of an active life. I worked, I walked quite a bit, I even managed the odd date (that was more painful than dialysis, but that's a whole other story lol) but really I found that while my lifestyle had changed, I adapted. I taught myself strategies...  I worked out ways to cope and....

It's not as inflexible as it may seem when you read comments. For example, it was often possible to move shifts around so I could do things like go to the footy with my family (most times I wished I hadn't gone!) or if I had other appointments to deal with. And the diet? It doesn't have to be a "you can never have..." and a long list of foods and stuff. For me it was all about moderation and mixing it up to keep track of what was in the foods I was picking, and to keep the balance right. and hey, I allowed the odd treat and I didn't suffer for it.

Quality of life does NOT have to be lost. Again everyone is different and I can't promise you anything but I do think you should at least seriously consider giving it a go for at least 3 months... see how you handle it, how you can work with it, how it affects you (eg: tiredness, ability to do stuff you WANT or NEED to do etc) and then make your choice. Talk to your nephrologist and/or social worker about options for treatment and where you are at physically and what you could do.

Just my 2 cents.

[KarenInWA]

I'm not clear what the exact reason is but here in US you can't have home hemo if you live alone. Is it government regulations? Fear of lawsuits (prob)? Some weird lobbying group? I don't know if we've ever gotten to the bottom of this. I thought the FDA wasn't allowing it but there were vehement reactions to that.

Bill Peckham does HHD with NxStage alone. I was going to look into doing in myself if I didn't get a transplant as quickly as I did (live donor). NxStage apparently has a "Home Alone" program, in areas that allow it to happen.

I live in the progressive Pacific Northwest. 

KarenInWA

[Henry P Snicklesnorter]

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