Just A Question!!

[TxGuyTx]

Sorry If this the wrong fourm!!!

BEEN ON DIALYSIS FOR A LONG TIME!! I have actually had thoughts of stopping my treatments. What I dont understand is why people have such a
big problem with it. You are always told you have a choice as far as your treatments go but just mention stopping and people go ballistic. If When you have been doing it as long as I its life sucking (my opinion). Dialysis has been nothing but a burden in my life. Fyi Been on for 21 years since the age of 9. The worst part of being sick is 98% of the people i come in cotanct with dont understand. Most feel sorry the rest try and give me the "your  a strong person" speech. I hate talking about my illness but its somthing i have to deal with. Back when I frist got sick on started on dialysis. I promised my self that the moment dialysis became more that I could handle I would stop. Lately its been weighing heavily on my mind. All i Want is to rest and be normal even if it for a week or three however long it may take and God says it is time!!

Am I wrong for feeling this way?


TxGuyTx

[tweetykiss]

I think life is too precious and you should keep with the treatments......my husband's creatinine is rising sharply and he may go on any day but I know it is not the end of the world.....it is not....now we are all here to love you and support you.....most people here are on dialysis and they will say it is not fun but they make the best of it.......once you get to know us, you will feel better....

My honest opinion.....quitting treatments is suicide and that is a crime......remember that.......now we are here when you need us and my door is always open for you........

[TxGuyTx]

Thanks for your response! As for stopping my treatment being a crime thats your opinion!. If had cancer we wouldnt be having this coversation.
Dialysis is not a cure which is what most people think. I know it just another treatment.  Dialysis robbed me of my child hood. Ive been sick since the age of nine. Everything that can go wrong with a Kidney/dialysis paitent has gone wrong. Fyi I am working on my 5th fistula. The last on before this one. Kept track of all surgeries and had a total of 123 in a span of year and 2moths of geeting it. So you see maybe that might give an insight to my feelings.

TxGuyTx

[lola]

I'm so sorry for what you have been through, my husband was on dialysis a couple of years ago and he wanted to stop at one point but thank God his kidney started to work again. Well his kidney has started to to shut again and he has said he will go on dialysis again until he either gets the "gift of life" or his quality of life is no longer there and i have promised him that as hard as it will be i will support him in his decision. I don't understand why people support cancer Pt's in there decision to stop there treatment's but a kidney pt is wrong in stopping there's. Just so you know my husband also started to get sick when he was young. We are here for you, please keep us updated.

[tweetykiss]

Thanks for your response! As for stopping my treatment being a crime thats your opinion!. If had cancer we wouldnt be having this coversation.
Dialysis is not a cure which is what most people think. I know it just another treatment.  Dialysis robbed me of my child hood. Ive been sick since the age of nine. Everything that can go wrong with a Kidney/dialysis paitent has gone wrong. Fyi I am working on my 5th fistula. The last on before this one. Kept track of all surgeries and had a total of 123 in a span of year and 2moths of geeting it. So you see maybe that might give an insight to my feelings.

TxGuyTx

Thanks for more information.....I am very sorry about your childhood and that you had to suffer such.....yes we still would be having this conversation if you had  cancer since I would tell you to keep on going....I agree 123 surgeries is way too much in a year and you went through so much......it is a very hard life but not the end of the world.....after reading your first post, I told my husband that if he had to go on dialysis to never stop dialysis and I know there are others here who would tell you not to stop the treatments.......

I hope it is helping you to post your feelings on this board....we are all here to help you......friends....

[George Jung]

I wouldn't say that you are wrong for your feelings.  At the very beginning for me (dealing with kidney failure) I was deeply troubled and can directly relate to what you said.  We are different, although close in age, in that I have only recently been faced with renal failure.  Is there a reason you have not had a transplant?  As for people going ballistic about stopping treatments, I would say it is because they do not understand the "life" we live.

[keefer51]

I do know how you feel i have been sick since the age of eleven. My childhood too was robbed. Hospital visits, painful tests, fevers and everything else that goes with renal failure. I received my first transplant at the age of 38. I was married with three children. I knew it wasn't a cure. But i fell under the pressure and my brother gave me one of his. It lasted a Little over 10 years. I am now on dialysis on my third fistula. When asked when i wanted to go on the list i said i didn't. I was then sent through the system. I saw doctors who would tell me all i have to live for. When i told them calmly i lost everything and how i did i didn't have to see them anymore. They left me alone. People that don't understand what we go through will usually jump to the conclusion that they can put a guilt trip on us. I wouldn't tell you you are wrong for feeling the way you do. I understand.

[jbeany]

I don't think you are wrong for feeling the way you do. I think the fact that I have the option to stop the treatments is one of the things that makes continuing them bearable.  It's always been important to me that dialysis is something I'm choosing to do, not just something that is being done to me.  Knowing I could quit is what got me thru the first few months when it was truly miserable for me.  Things are going much better for me now, but I can certainly understand wanting out if things are consistently bad for you.

Has anyone you've talked to actually had a rational discussion with you about this, or are you only getting knee-jerk "that's suicide" reactions?  Is this something you've been contemplating for a while, or is it something recent?  Have there been any major changes in your life recently that might be making the stress of dealing with dialysis that much harder, or is this from the exhaustion of being sick for so long?  Have you seen a counselor?  (Providing you can find one willing and capable of understanding that dialysis IS life support, and that it's not necessarily irrational to want to stop.)  I know that if it was me, I would want to at least try some form of counseling and/or meds to make sure that these thoughts weren't the result of a treatable depression before I made any irreversible decisions. I think you need to take those kinds of steps to assure yourself, your doctors, and your family that this is truly what you want, and not some whim that you will get over in a short time if you just keep slogging along.  In the end, you have to do what is best for you. 

This isn't the first time this topic has come up on this board.  You might want to read some of this thread - http://ihatedialysis.com/forum/index.php?topic=1113.0  It's not a calm, quiet discussion, but if you have already been discussing this with family or friends, you know that most people have pretty strong opinions on the subject.

[glitter]

I think you will find that there are alot of people here who will say being able to stop treatment as the right of a dialysis patient.  That is something I have struggled with, I am just the wife of a patient, so of course I can't really understand , but I am trying very hard.  I would want the person to take a long time to decide, to treat their depression if they have it, (and its natural to assume most do), and make absolute it really is there wish. I am not going to judge someones morals for finding relief if thats what they really want, I do not think ending life-support is suicide, it is no different then a cancer victim choosing no treatment. I don't think its illegal either.

[skyedogrocks]

I'm so sorry for all that you have had to endure.  I feel that maybe you should talk to someone about this, but in the end, it's your right and your life, who am I to say what you can or can't do.

I see what my husband has to do and have heard what he has gone through for many years.  I know he just gets tired of it all some days and doesn't want to do anything.  I let him vent for as long as he needs to and then have a good "kick in the ass" conversation with him.  He appreciates it and gets back into the swing of it. 

I hope you are able to find some peace in your life, you truly deserve it.

Edited - oops that was supposed to be a smiley face, not a rant.  Sorry!

[RichardMEL]

tx - I couldn't comprehend 21 years on dialysis on top of starting at the age of 9!? I'm only coming up to one year on for me so I feel like a baby.

However with my almost 1 year of experience I can relate to the frustration that dislysis brings to ones life and wondering if it's all worth it and so on. I don't think you should feel bad for how you feel - they are YOUR FEELINGS... who else can say they are wrong or invalid?

The point I would think about as much as anything is the effect any decision you make would be on your friends, family etc - as much as we want to think the decisions only affect ourselves, and that may be true if you HAVE no family or loved ones - most of us do.. even if they are just a few people (as in my case). I know I wouldn't want to throw it in and leave behind my family or even my ex girlfriend (shh don't tell anyone.. I think she still has a thing for me ).

I would also suggest you try and check out a very recent edition of the "Kidney Talk" podcast from the Renal Support Network (you don't need an ipod/mp3 player to listen) - they interviewed a woman who felt EXACTLY THIS WAY and came within a few days (I think) of passing away due to not being treated before she "saw the light" and turned it around and now has a transplant and is doing pretty well. I found that interview very interesting (oh and I LOVE Stephen Furst! ).

At the end you need to be comfortable with whatever decisions you make with your life. I think that's what is paramount.

[KICKSTART]

A the end of the day , you have to do what is right for you . But i do think you may be depressed at the moment , which is understandable. I think we all ask the question , how long can we go on , the same routine day in day out. I have often felt like this at my lowest , whats the point  i would ask myself , then out of nowhere something small happens, that lifts my day. You must be around 30 ? You dont mention any family ? I really think you need to talk this through with someone, who wont judge you. Sometimes just putting it into words does help. 

[st789]

I understand exactly what u r going through.  No one has the right to tell u. how u feel.  People around us always try to put a stop on our guilt or pity feelings.  I agree with you about people around us say thing like we are strong or feel sorry for us.  Being on dialysis as long as you are and experienced so many up and down, I totally understand how u feel.  But the thing I always remind myself when I am down is being hopeful to the possibility something good that may happend in the future.  Hang in there and continue coming here for supports, helped me tremendously when I was really down on myself.  Here I feel secure to share or disagree with members here because I feel like people actually experience this freakin disease can truly understand the up and down of its and people closed to us sometimes are just do not understand no matter how we explain it to them.  I hope you find peace and resolute in your decision and spiritually.

[MyssAnne]

I cannot imagine having to go through life as a dialysis patient, and not having a 'real' life. That said, do talk to someone who is not gonna give you platitudes or be shocked.  There have been times when I get so angry at life, I just do NOT want to do this any more. I have thought
it would be nice to have a 'vacation' from dialysis for a while too, and this is only my 2nd year.   Perhaps that is a question to be brought up
to your doctor. Can you have a week, maybe two without repercussions?  No dialysis then?  If you want to stop it all together, I hope you
can find somewhere to do it comfortably, such as a hospice.  Whatever you do, please do let us know how you are. 

[livecam]

I've seen patients who decided to stop and then after a period of time were gone. 

The whole dialysis thing is a chore that seems hopeless sometimes but it doesn't have to be.  The monotony of the same routine over and over again must wear on everyone who has to do it.

Why not try to break things up a little bit with a trip or some other fun stuff?  Rather than stopping entirely it is possible to skip a treatment from time to time with your doc's approval and go do something good with that time.

Getting out of town for a while if it means missing a treatment or arranging dialysis somewhere else really makes life much more interesting.  There are so many things out there that you could do that are going to remind you that life is worth living even with the ball and chain of dialysis tugging on you.

There are a zillion things to do out there.  Why not start thinking about what you want to do and make some plans?

[st789]

Having a plan is helpful but it needs to be carefully think through.

[Sluff]

TXGuyTX,

I'm sorry that you have come to that point in your life that feel the way you do. I personally feel it is your choice. However in the past I had a rough life nothing like dialysis but bad enough where I have thought about suicide. I'm glad I never chose that path today because of the wonderful things in my life. Oh I still have problems and I still have thoughts but remember you never know what the future holds. I want to make clear that I don't think stopping treatments is suicide in any form. When your kidneys quit, science took over or you would have died a long time ago.
I am not on dialysis so I can not relate with your feelings but I do understand them. Whatever you decide may you be at peace with whatever decision you make.

We care, and support you.

Sluff/ Admin

[stauffenberg]

It should be kept in mind that voluntary withdrawal from dialysis treatment is one of the commonest forms of death among renal patients, accounting for 20% of all deaths.  This number does not even incllude suicides, which for some bizarre reason are counted separately, and which are estimated to occur at four to five times the rate in the healthy population.  I have always wondered why it is considered 'humane' to have an animal in suffering euthanized, but somehow 'immoral' for a human being to make the same choice for himself?  In situations of emergency euthanasia is frequently practiced as a matter of course with little worry or fuss.  One old consultant rheumatologist who was a friend of mine said that when he was with the British Army in North Africa in 1941, they always cut the throats of wounded patients they could not take with them during a retreat, in order to spare them the suffering of dying slowly without medical care, food, or water in the desert, and nobody gave the matter a second thought. 

Fortunately, many countries, such as the Netherlands and Switzerland, are now waking up to the reality of pointless human suffering from incurable disease, and in those jurisdictions physicians are allowed to perform painless mercy killings.  In Switzerland, a group of volunteer physicians called Dignitas will perform mercy killling on patients from any country with intolerable medical conditions, for a nominal fee to cover expenses of about $300. In all the world's hospitals and hospices there is an informal practice of mercy killing, and hopelessly ill patients are frequently put out of their misery by a bolus of morphine, ostensibly given to control their pain, but in fact given to put them out of their misery.

[TxGuyTx]

I want to thank everybody for there kind words. Its nice to know that there are people that actually understand what I am going thru.

A little more on my story. I have had a transplant but only lasted a year got really infected and almost died,thanks to the emergency surgery
I made it. When asked if I wanted to be on the transplant list kept saying NO NO NO, but the doctors kept bugging so finally said yes. Got all the testing done so they would leave me alone. I am on the list , but was told I was going to probally wait between 7-10 years or more. Reason being
I my illness duration I have had countless transfusions, a previous transplant, and prone to infections (cold almost killed me one no joke). A for getting
a LRD transplant is out of the question I will not under any circumstances put any one I care and love thru the pains of this. It would break my heart to see one of my family members suffer or get sick cause they tried to help me dont think i could live with that. This is my burden and will see it to the END!  I have had many offers but my anwser will always be NO NO!!. (FYI ) I know what will happen if were to stop and it does not scare me.

As for support I have some. My mother says she supports me 100% what ever and whenever I decide. The rest of my family members were just very judgemental and very critical. Some said I was stupid and many other thing. There opinions!!!!!


 Oh yeah GOODLUCK with the ex "RichardMEL"  LOL!!

Again thanks to every body for undersatnding. Your words really mean alot. Will keep you updated

TxGuyTx


 

[LightLizard]

feelin for ya, guy. i've had the same argument with myself, and i've only been on dialysis since last october. i told a fellow patient yesterday, in a waiting room at the clinic, 'i'll be really pissed off if there IS an after-life and i wasted all this time and energy just to stay alive on dialysis...' i meant it as a joke, i think...
when i was first told by my nephrologist, that i had to go on dialysis and what that entailed, i looked at my wife and said, 'well, maybe it's time to go Home....' the doctor flipped out on me! he proceeded to tell me how precious life is and how he would do anything if he were in my position to stay alive for his children's sake and all that.....bla, bla, bla... the thing is, he's NOT in my position, and it's easy to say what you would do in anothers position, but the reality is, most people talk the talk real well, but when it comes to walking the walk, it's another story.
nevertheless, he did make me think about things. i realise that dying is an option. an easy one, too. but dying is not about us. it's about the people left behind. and i'm not ready to cause that kind of pain to my loved ones, no matter how much i hurt. not yet, anyway, and not as long as i have some kind of say in the matter.

i hope you can find some peace, somewhere. today might not be a good day, but tomorrow might be, and that is the hope that keeps me breathing.

love

~LL~

[angela515]

I think you should be able to do whatever you want. It is *your* body... and your life. Dialysis is after all life support... if it were someone on a different form of life support such as a ventilator or something... nobody would get all hyped up about it and say stuff about the choice.

 

[LightLizard]

I think you should be able to do whatever you want. It is *your* body... and your life. Dialysis is after all life support... if it were someone on a different form of life support such as a ventilator or something... nobody would get all hyped up about it and say stuff about the choice.

 

don't kid yourself. people will always say something about making such decisions. mostly because they place themselves in the same position and are terrified of the consequences in the first place.

[stauffenberg]

It seems obvious to me that stopping dialysis if you need that treatment to stay alive is suicide.  If a person with normal health, who needs to have a drink of water at least once every four days to stay alive, were deliberately to go without water for longer than that and died, we would have no hesitation in calling that suicide.  But if a person with endstage renal failure, who needs dialysis at least once every 12 days to stay alive were deliberately not to have that treatment, why do we hesitate to call that suicide?  In both cases the person does something deliberately which he knows will result in his death.

It is empirically inaccurate, however, to refuse the offer of a kidney from so many potential live donors out of any concern for their suffering.  Scientific studies have clearly shown that the health and lifespan of kidney donors is the same as that of people who do not donate a kidney.  Further, the hospital work-up for a transplant donor is so exacting and the standards of health are so high, there is no risk that anyone who might be harmed by the donation would be accepted.  If the kidney is removed by a laparoscopy procedure, there is next to no pain at all.  In any case, the total suffering and inconvenience to the donor is a miniscule percentage of the suffering you experience as a dialysis patient every week, so by accepting a kidney from a healthy donor, you are vastly reducing the amount of human suffering in the world, which is a moral duty, isn't it?

[jbeany]

A moral duty to impose even a small amount of suffering on another person to end your own?  Not in my world! 

And whether or not you call it suicide is simply an argument about semantics.  Calling it different names doesn't make it any less a dialysis patients right to choose for themselves.  We are on an artificial means of life support, and we can choose to stop it.

[glitter]

someone used the phrase  'compassionate conclusion' to signal the humane ending of an animals life- I think we deserve the same end if we are suffering