considering giving up dialysis treatment

[hephziba]

I am getting rather tired of capd and considering giving up dialysis. Has anyone else done this and what was there experiance, did they have any trouble getting the drs to leave them alone ??

Id Apreciate anyones input.

I know they say youll die but isnt that simply a fear tactic?
 

[Panda_9]

Unfortunately its not a fear tactic. You WILL die if you dont dialyse. That is why we do it, of course. Unless you want to die, I would keep dialysing 
If CAPD is keeping your bloods in order then I say stick at it. If not then perhaps consider hemo. However, CAPD gives you alot more freedom.

[Epoman]

I am getting rather tired of capd and considering giving up dialysis. Has anyone else done this and what was there experiance, did they have any trouble getting the drs to leave them alone ??

Id Apreciate anyones input.

I know they say youll die but isnt that simply a fear tactic?
 

  YOU WANT MY INPUT? YOU GOT IT!   sorry to say this and it might piss you off, but here is a qoute from you when you introduced yourself:

I have been on dialysis for almost a year now, I am 25 years old and I was rushed into Hospital just in time for my first wedding aniversary

So not only are you a coward but you're selfish   You have been on almost a year!   WTF??? PLUS you have a new spouse?   I hope this is a joke because you have not earned the right to want to give up (yet). Your only 25, I was 21, (now 33) I too thought my life was over but never did I ever consider stopping dialysis. Not for myself but for my to new bride (married LESS than a year, now going on 13+ years). Don't you think your spouse loves you and will miss you? what about your family? Friends? Yeah dialysis sucks donkey balls, but be strong and take what life gives you. You never know what life has instore for you. I'm talking to you like this to get you MAD, and want to fight. Don't lose your will. You know what you need? you need a child, a child CHANGED my life, I live for my son, in fact I live through my son. He is my top priority and my "Will" to live.

IF you ALREADY have a child then you really are a selfish person and you REALLY suck HARD, so please stop dialysis NOW!   LOSER!

If not, STOP feeling sorry for yourself and get your shit in order and hold on because it's going to be a long hard road ahead, but along the way you will have some good times.  

But getting back to your post, If you tell your doctors you wish to stop dialysis, they legally have to leave you alone, dialysis is a treatment option, NOT a life requirement. You will live maybe 2-3 weeks and eventually the toxins will cause you to go into a coma and you will die. Some say it's a peaceful way to go but I don't buy that. I feel like shit sometimes by Monday with no dialysis over the weekend, I can only imagine after 2 weeks.  

So I hope you don't get mad at me for this post, I just want you to LIVE! You have so much to look forward to, you just don't know it yet.  

- Epoman
Owner/Admin

[Rerun]

Heph:  I understand your feelings.  I was just married and then my kidneys failed.  I hated to see my husband (now ex) slow down life for me.  I hated to see the way he looked at me with tubes hanging out me.  I wanted to die so he could be free.

Then I got a transplant and he got a girlfriend.  Don't give up life to make someone happy (if that is going on).

Yes, you will die without dialysis.  You will die someday anyway.  The thought crosses my mind everyday especially when I'm having access problems.  I swore for 17 years that if my transplant failed that was IT I would NOT go back on the machine.

Well, here I am.  I hate dialysis, but there is an innate "will to live" that God gave us.  It is God's plan not mine.

That's what this site is for.  To vent and let your feelings out.  But, if you are asking if any of us have quit dialysis and have lived to tell about it..... NaOOO! 

[Epoman]

Let me also add, I ALWAYS hated dialysis, and I have hated my life, and I had wish I was DEAD! BUT I never stopped fighting. I've been on HEMO 13 years straight, NO transplant. And believe me I have had my moments where I just broke down. I hate the WAY I have to live, but what gets me through is there are people far worse off then me, There is ALWAYS someone worse off then you. If you don't believe me go to a children's hospital and take a walk down the pediatric BURN unit. OR go ask a person who has MD, and can't even wipe their own butt, and see if they will trade you their kidneys for your problems.

Don't get me wrong THIS DISEASE SUCKS! but don't let "IT" beat you. I want to see you post HERE instead of www.dialysisbeatme.com

Stay strong and remember we are here for you, brother.

- Epoman

[geoffcamp]

Hey hephziba, I feel you trust me I do.. lately I to have been considering giving up and letting nature take its course.  I have been back on dialysis for almost 6 years now following a failed transplant.  I am alone, have no friends, live in my parents house, just got fired "laid off as they put it" from a job I loved because of dialysis and other complications from dialysis, have no money and bad credit from hospital bills and my access has been giving me problems much like Rerun.  Last Monday it clotted and I was going to make the decision to not get another cath or access and just die.  I have the same depression you feel I am fairly young too 36 and my life is nothing like I planned or wanted.  I hate relying on machines to keep me alive, I hate what this has done to my body, self image and self esteem.  Everyday I feel alone and think that I have nothing to contribute to this world yet for some reason I get my ass up and go to treatment.  i don't know why, I can't explain it.  For the last month or more i have been medicating myself with xanax and sleeping pills just to sleep or not feel.  I am up to about 4 or 5 2mg xanax and 2-3 30mg restril a day now and it is not helping.  I think I am going to seek some kind of counseling and maybe you should consider it too.  Who knows maybe it will help maybe it won't but it sure can't hurt at this point.  I just wanted you to know you are not alone in your feelings.  This is an emotional and physical situation and it is terrifying to deal with.  If you wish to talk chat or e-mail I will send you a personal message with contact information, who knows maybe we can figure a way out of the cycle that I know I am in and it seems you are too.  Lets see what we can do, ok  I understand... Geoff

[Sara]

I know that not going through this whole experience myself, I can never relate to you, but speaking as a wife, please keep on fighting.  If you are seriously thinking about stopping, think about how devastated your wife and family and friends would be.  IMO, you have a lot more to live for than you realize.

[kitkatz]

No yelling here in this post. Just a gentle reminder that there are lives you have touched just by being here and by being you.

[Ginger]

Heph,
Sorry you feel so tired of CAPD, not sure I wouldn't feel the same way if I were doing CAPD. I have been doing PD for almost 2yrs using the cycler at night. It is less intrusive of your time than CAPD. It is just hooked up at night while you sleep and disconnect in the morning and forget about PD for the day. Very easy to do and you still have your days to live your life.  Without dialysis you will die! I agree with Epoman. You are very young and still have a lot to live for. Do you talk with anyone? That includes your wife and family. Don't you think they care what happens to you? I saw your post on the Global Dialysis board too. Get the help you need and why not try the cycler for a change and see how it goes.  There are always options with dialysis. Without dialysis there are no options!  Ginger

[goofynina]

Heph,  Please let me tell you first hand what near death is like (without dialysis)  i was told in January that my kidneys were failing and i ignored it.  Well, right before i started dialysis, this is what happend...   My legs were swollen to the point where i couldnt bend them,  therefore moving was nearly impossible,  i threw up EVERYTHING even water,  i was very delirious most of the time, didn't know what day it was or if it was day or night cuz all i did was sleep in a very dark room,  in the extreme heat of summer i was covered with blankets, i got sores on my legs from being on them so much, i got extremely out of breath if i just got out of bed, i missed out on weddings, birthday parties, family get togethers, i lost that much time of my life, thank God my mom threatened me when she did,  i wouldn't be here today if she hadn't.  And yes, it was tough,  it still is (3 years later for me) and NOW i am loving and cherishing life every minute and every second of the day.  Not a day goes by that i dont wake up and thank God for giving me another chance, another day, for giving me this disease INSTEAD of taking me home.  It gives me that much more time to watch the little ones grow,  to smell more flowers,  to be around my family and make more fond memories for them to remember me for when i do go.  Everything happens for a reason and most times we just dont know what that reason is,  we just need to accept it and trust that God has His plans.  I feel that there have been people in worse situations that i have helped due to my illness.  I let them look at me and see that they dont have it so bad and yet, i look at others (like the little ones that have ESRD and cancer) and think, i dont have it so bad either.  So please my friend,  think about it long and hard,  listen to what these people on this site are saying,  AREN'T THEY AWESOME,  I applaud all of you.  The way you all come together and give such great words of encouragement just touches me.  Epoman, i hope you are sitting back and admiring what you have created, you should be damn proud, you better be,  i know i am damn proud of you!!! LOVE TO YOU ALL!!!!

[kevno]

I have no fear of death, been there 3 times. Seen nothing Has I say in my Signature for the site: Renal Patients Never Give Up!!!!   On the 26th May this year I have been back on dialysis for 18years, 12 of which I was on CAPD 4 exchanges a day. The last 6 on haemo. We all think of ending all the pain and misery of dialysis. If we did not we would not be human. But to do it by ending treatment. Is the cowards way out. You have a life, a husband. Think of the positive things in your life and not the negative things. That is all I can say for now.

Kevno

[hephziba]

 the sites full of real people and its good to know other people go through this stuff, 

I hadnt had a holiday for the whole time I was on Hemo, and my wife and I really needed one, everytime I tried to arrange a holiday on Hemo, there was no beds for the dates we had booked, so we changed to capd to get a holiday and get some life back.

But I had put loads of hope in a holiday somehow making me feel normal again, somehow meeting a need, yeah it was good, while we were doing stuff and visiting places and tourist atractions, but in the evening when we slowed down I felt really depressed and like whats the point, just like a prisoner.

it seems holiday far from showing me how free I was made me realise how hard it is for your family to have to wait for you while you exchange in the car, and folks stairing at me while I do my exchange bugs me, not my family just random strangers.

anyway Thanks for your input, It would be good to get some more english folk on here theyre all really miserable and It would be good if they knew the site exists.

thanks for all your input, in a much better space right now and apreciate peoples advice, and Epomans advice made me chuckle, like a slap in the face

[kevno]

English folk on here they're all really miserable

Look who's talking I hope I do not come across to miserable (keep quiet, Rerun and Kitkatz just before you two say anything )

I am from Manchester UK, Nice and warm indoors, raining nonstop outside

Anyway I am now going, for you have made me feel Miserable

Kevno
Think I might kick the Cat to cheer myself up a bit

[Bajanne]

First of all, let me say that I really thank God for this message board (Epoman, you too!)  I came upon it when I was fearful, and totally ignorant concerning what was going to soon happen to me.  With the help of this board, I started dialysis with lots of advice (I even printed some of it) to help me make it through.
Secondly, let me say that I watched my father die of kidney failure.  He was never on dialysis.  In my country, the nephrologists act as Divine beings who say if you should get it at a certain age.  My father was 89, but a lively 89 with all of his faculties and in excellent health, except for his kidneys.  He never seemed to be in pain, but he got slower and slower.  He seemed to retreat from us.  He began to act as if we were not there.  There were times when someone new would visit and for that visit, he would be animated and be back to the person we knew, but if they came again, he would just blank them out as he did us.
I cannot say it was hard for him, but it was awful for us.  You would have to know the kind of person my father was to understand what it meant.  He was a larger than life person with an infectious laugh.  Though he had been a high school principal, he would become a child with his grandchildren and great-grandchildren.  Seeing like that was extremely painful.
I asked my doctor here how long I could last without dialysis.  I was trying to see if I could travel for more than a weekend (which is all I can do now without spending a lot of money for dialysis overseas), but he refused to tell me.  They don't want to encourage me in leaving out any sessions.
We are here for you.  That is what this board is all about.  YOU ARE NOT ALONE.

[Epoman]

the sites full of real people and its good to know other people go through this stuff, 

I hadnt had a holiday for the whole time I was on Hemo, and my wife and I really needed one, everytime I tried to arrange a holiday on Hemo, there was no beds for the dates we had booked, so we changed to capd to get a holiday and get some life back.

But I had put loads of hope in a holiday somehow making me feel normal again, somehow meeting a need, yeah it was good, while we were doing stuff and visiting places and tourist atractions, but in the evening when we slowed down I felt really depressed and like whats the point, just like a prisoner.

it seems holiday far from showing me how free I was made me realise how hard it is for your family to have to wait for you while you exchange in the car, and folks stairing at me while I do my exchange bugs me, not my family just random strangers.

anyway Thanks for your input, It would be good to get some more english folk on here theyre all really miserable and It would be good if they knew the site exists.

thanks for all your input, in a much better space right now and apreciate peoples advice, and Epomans advice made me chuckle, like a slap in the face

But I hope it was a slap in the face that made you think "hey my life isn't over" 

Check out this post of mine: http://ihatedialysis.com/forum/index.php?topic=252.msg3988#msg3988

[scarth55]

Hi, I started haemodialysis in 1972 when I was 21, now 34 years later after a full life and career I am delighted to be able to watch my grandchildren grow (6,8 and 9 yrs old). I have had lots of problems over the years including a couple of failed transplants (one did last for a good few years) open heart surgery for a quadruple bypass and replacement aortic valve. These have been a small price to pay to experience the love of my wife and children (and cat, Lucy) and there's no way I would give up unless I lost my mental faculties. Life is the most precious thing, many people don't have the opportunity to choose (cancer patients etc.) those of us who have been given a second chance must make the most of it. There is still plenty to enjoy despite dialysis. Good Luck and keep your chin up!

[goofynina]

Hi Scarth55,  I am so happy to hear that inspite of your ailments you still have such a positive attitude, I think it's a positive attitude that helps us each and every day,  if we start getting negative, then negative things happen.  Your Grandchildren and your cat, Lucy, are very lucky to have you,  i am sure you make a difference in their lives and will even beyond your time, they will know that even though you were going through these ordeals, YOU always kept YOUR chin up.  Great words of encouragement.  Hope to hear more about your grandkids and yourself as you live this wonderful life. 

Susie (Goofynina)

[Panda_9]

So very well said scarth!!! I had a moment yesterday where I just wanted to chuck it all in. And when I'm in that mood I just think of how much I want to live, and all my family and loved ones. It soon gets me out of that state of mind. Being on nocturnal helps too, as you know if you chuck it all in, you have to go back in-centre. And for me, 4hrsx3 isnt enough Dx for me.

Chin up, and take care of yourself

[Rerun]

I don't go for that BS about attitude.  If you think "positive" thoughts "positive" things happen to you.  What a crock!  We hang on for some reason, but it is not because we have a good attitude about dialysis.  Scratch said he is glad he is alive.  I did NOT read that he Loves dialysis.  This thread was started because Heph was dealing with his feelings.  I would hate it if all of us told him "not to feel that way" or "you need to adjust your attitude." 

We all have our days and that is what this site is for.  If you want to feel all warm and fuzzy go elsewhere.

[Epoman]

I don't go for that BS about attitude.  If you think "positive" thoughts "positive" things happen to you.  What a crock!  We hang on for some reason, but it is not because we have a good attitude about dialysis.  Scratch said he is glad he is alive.  I did NOT read that he Loves dialysis.  This thread was started because Heph was dealing with his feelings.  I would hate it if all of us told him "not to feel that way" or "you need to adjust your attitude." 

We all have our days and that is what this site is for.  If you want to feel all warm and fuzzy go elsewhere.

You and "goofynina" are not going to get along. 

[goofynina]

Warm and fuzzy???  Warm and fuzzy!!!!  LMAO... Maaaaan,  don't hate just cuz i see my glass as half full.  I just get the feeling that you just do not like me Rerun, which is cool, it is just sooooo obvious,  guess you called this one Epoman.  I feel sad for you. 

[Epoman]

Warm and fuzzy???  Warm and fuzzy!!!!  LMAO... Maaaaan,  don't hate just cuz i see my glass as half full.  I just get the feeling that you just do not like me Rerun, which is cool, it is just sooooo obvious,  guess you called this one Epoman.  I feel sad for you. 

No it's not you, Rerun doesn't like anyone. 

But seriously "Rerun" is just a "V.M.A.I.R." (Virtual Member Artificial Intellignece Robot) she is a programmed "Bot" and she is programmed to talk crap to current/new members who are to happy or as you say "see the glass as half full".

You mean you thought "Rerun" was a real person? 

- Epoman

[Panda_9]

That might be the way you feel rerun, but some of us might think that your attitude is bullshit. Being negative will get you know where. I think ranting is good to let things out, but it doesnt have to be negative. I dont see the point in being negative, its just going to be a horrible miserable life if thats all you know how to be. I most certainly do not love dialysis, but for god sake it is keeping us alive, there has to be something good in that!
If this forum is just for negatvitity, then I think I would rather not be a part of it, if we are going to be slammed for being positive. Since I joined this forum, and have read most of it, it has mostly just depressed me because of all the negative attitudes. While I do like to have a rant, I dont wanna be depressed.

[Epoman]

That might be the way you feel rerun, but some of us might think that your attitude is bullshit. Being negative will get you know where. I think ranting is good to let things out, but it doesnt have to be negative. I dont see the point in being negative, its just going to be a horrible miserable life if thats all you know how to be. I most certainly do not love dialysis, but for god sake it is keeping us alive, there has to be something good in that!
If this forum is just for negatvitity, then I think I would rather not be a part of it, if we are going to be slammed for being positive. Since I joined this forum, and have read most of it, it has mostly just depressed me because of all the negative attitudes. While I do like to have a rant, I dont wanna be depressed.

aMbEr,

Yes this site is for ranting and venting, but you need to understand that every member has had their own battles to fight, and some members have suffered much more than others. I don't believe you have read MOST of the posts here all 4,100+ and are still able to say "all of the negative attitudes" There are many positive people on this site. But honestly what did you expect when you joined a site named I Hate Dialysis? The reason this site depresses you is because dialysis is depressing. No matter how positive you are, we can't control our fate. The only good thing about staying positive is that when the bad things happen we are more emotionally able to cope and some how find the inner strength to go on. I mean think about it for a second, no matter how positive we are we can't stop a fistula or graft from clotting, sure we can do things to help prevent it from clotting but that's not being positive that's being pro-active. And yes dialysis is keeping us alive and that is good, but death really isn't that bad, but I guess that depends on your religious beliefs. I hope you stay with us, you are a valuable member even after you said this to me:

"but I find you Epoman, to be very rude and focus on the negative." in this thread http://ihatedialysis.com/forum/index.php?topic=252.0

In which I replied to you here: http://ihatedialysis.com/forum/index.php?topic=252.msg3988#msg3988 Which you never bothered to reply too. 

But anyway did that post in the last link sound negative to you? We all have our moments of rage, and we have our happy moments. And on this site you WILL see BOTH sides.

- Epoman

[Rerun]

Goofina - Epoman is right.  I don't like anybody, so don't feel singled out.  (Ask Kevno)   

 I think ranting is good to let things out, but it doesnt have to be negative.

Amber - Please give me an example of a "Positive Rant"........Please!   

I'm not a pessimist I'm a realist.  I call things how I see them.  I think flowers are pretty, but they always die.  That isn't negative, that is just the truth.  I hate dialysis.......period.  I mean put me in a torture chamber......I'm still alive.  I would NOT have made it in the consentration camps.  I would not have made it on a wagon train out west.  I like things to be good and when they are not I say so.

Are you two the ones that go "skipping and bouncing out of the dialysis clinic"?