What makes it worth the effort?

[Sluff]

Wow, I just read thru this thread.  I cannot imagine the day will come when I say I have done it all and I am ready to die.  I have done alot  ( well, not the "two chicks" thing!!) -- seen much of the world, worked with all types of people.  I truly feel ESRD has made me appreciate everything even more. Tomorrow isn't promised to anyone; we need to live every day with wonder and amazement.  Joe Paul, Sliff, Zach seem to all have such wonderful outlook on life and there posts make me want keep going. Epoman gives us a place to have a voice; Lost Sheep, what have you really done except please yourself?     If that is how you truly feel, why don't you step aside and let the people who want to live, have your space on this incredible earth?

Paris you really should try the two chick thing.    just kidding

[RichardMEL]

Paris, you know you just echoed something I was thinking for a few posts now. Sounds like all Lost has done in his very fufulling life is to please himself.. and by extension deciding to quit it all when the money (what money??) runs out and he's seen the Grandparents and/or whoever else is done is also highly selfish.

I wonder, Lost, should you come back and respond... are/were you planning to tell your grandparents, parents and any other members of your family that you are going to pack it in? Or would you just leave a little not saying how special you were and you needed to do this?

You said, I think, in your first post that you had nobody left around you..  (perhaps I am paraphrasing.. I do not have the time to dig back to page 1 for the exact quote) yet now you say you have grandparents and perhaps one or both of your parents...

Is there any consideration to the feelings of those around you who would hopefully love you? While it seems you don't seem to love yourself, you clearly have an emotional bond to those grandparents (as you should) since you want to see them again.. but you seem to put yourself ahead of them and everyone else if you just want to pack it in.. no aparent thought or care for those you leave behind. Granted, maybe not a lot of people will shed a tear, if your posts are any indication of your true personality and outlook on life ("me! me! me! it's all about ME!" is surely how it comes across).

I feel sorry for those members of your family who will bear the emotional burden and pain if/when you give up the ghost.

As for negative comments about this site.. Hey, we are all entitled to our opinions and I'm happy to debate backwards and forwards a point of view, but I am not certain making those sorts of comments help. Also, if the site were such as you suggest, run to the "majority" viewpoint, then surely Epo or some other admin would have booted you off ages ago.

It seems a little odd wishing "us" all luck when you clearly seem to think we have the wrong idea about how most of us try to cope with kidney disease...

I certainly wish you luck too, and the maturity and self awareness to think perhaps of others than yourself during this difficult time. While having to deal with Dialysis and the like is bloody difficult for those of us on it, it sometimes can be easy to forget those around us who care and love us and feel sad, helpless and frustrated.... don't add to that by taking the easy, selfish way out.

Just my 2 Australian cents worth

[angela515]

I personally believe that everyone should be able to make their own choices, medically. If they want to not do dialysis, they shouldnt have to do it for other's. I personally want to live, and thats why I did choose dialysis, however I respect the fact not everyone wants a life on dialysis, and thats their right if thats what they want.

[glitter]

maybe he posted from that dark ugly ,lonely place inside all of us-that gives-up doesn't care,lashes out at the very people who try to help us-in anger/dispair. Maybe he is in denial about the whole reality-doesn't want to face it-and being mean to the people here is just a cry of rage at himself.maybe he just wanted compassion,and didn't know how to ask for it.....

[stauffenberg]

I support Lost Sheep 100%.  This board is called "I hate dialysis," not "I am so afraid of admitting how bad my life on dialysis is, that I forbid anyone else to say anything which may open my eyes."  Epoman founded this site so that people could express their true feelings about dialysis without the usual censorship we have to endure from the medical profession, which is always trying to "Disneyfy" our experience and get us to chirp that everything is wonderful, so they will feel powerful and good, and so society will not have to admit that it should do more to address the plight of dialysis patients.  But it is then extremely ironic to find that the same instinct to paper everything over, to cover everything up, so that we can all continue whistling through the cemetery like children afraid of the dark, and never admit how bad things really are, because we are not mature enough to face up to the real difficulties of the situation, and have to take refuge in overly optimistic fantasies, recurs, despite the freedom of this forum, as a result of what the patients themselves seem to need, rather than the institutions which seek to dominate them.

Let's admit the facts rather than try to hide from the truths Lost Sheep dares to speak, but which few here dare to hear.  The incidence of clinical depression among dialysis patients has been measured at rates ranging between 5 and 60%, depending on the study population.  Anxiety is reported in 50 to 70% of dialysis patients. (Data from Jeremy Levy, et al, Oxford Handbook of Dialysis (Oxford: Oxford University Press, 2001, pp. 64-65.)  20% of dialysis patients die from voluntary withdrawal from dialysis (Levy, p. 530), and 5% of dialysis patients actively commit suicide, a very much higher rate than in the normal population.  Levy concludes: "It is not uncommon for patients or family to feel that the quality of life on dialysis is so poor that they would rather die." (p. 534)

[boxman55]

"I certainly wish you luck too, and the maturity and self awareness to think perhaps of others than yourself during this difficult time. While having to deal with Dialysis and the like is bloody difficult for those of us on it, it sometimes can be easy to forget those around us who care and love us and feel sad, helpless and frustrated.... don't add to that by taking the easy, selfish way out." Well stated, I personally have ignored others around me because I was feeling sorry for myself. Even to the point of lashing out. I need to fix that----Boxman55

[Epoman]

I support Lost Sheep 100%.  This board is called "I hate dialysis," not "I am so afraid of admitting how bad my life on dialysis is, that I forbid anyone else to say anything which may open my eyes."  Epoman founded this site so that people could express their true feelings about dialysis without the usual censorship we have to endure from the medical profession, which is always trying to "Disneyfy" our experience and get us to chirp that everything is wonderful, so they will feel powerful and good, and so society will not have to admit that it should do more to address the plight of dialysis patients.  But it is then extremely ironic to find that the same instinct to paper everything over, to cover everything up, so that we can all continue whistling through the cemetery like children afraid of the dark, and never admit how bad things really are, because we are not mature enough to face up to the real difficulties of the situation, and have to take refuge in overly optimistic fantasies, recurs, despite the freedom of this forum, as a result of what the patients themselves seem to need, rather than the institutions which seek to dominate them.

Let's admit the facts rather than try to hide from the truths Lost Sheep dares to speak, but which few here dare to hear.  The incidence of clinical depression among dialysis patients has been measured at rates ranging between 5 and 60%, depending on the study population.  Anxiety is reported in 50 to 70% of dialysis patients. (Data from Jeremy Levy, et al, Oxford Handbook of Dialysis (Oxford: Oxford University Press, 2001, pp. 64-65.)  20% of dialysis patients die from voluntary withdrawal from dialysis (Levy, p. 530), and 5% of dialysis patients actively commit suicide, a very much higher rate than in the normal population.  Levy concludes: "It is not uncommon for patients or family to feel that the quality of life on dialysis is so poor that they would rather die." (p. 534)

I never said life on dialysis was great or that I was afraid to admit the truth, YES dialysis SUCKS and I hate living my life this way. This is not the way life was intended to be lived. I too get depressed and have anxiety attacks, and I have dealt with MANY complications of long term dialysis. And I too have felt that I'd rather be dead at times. In fact I welcome death and when it is my time to go, I am READY. However as long as I am on this earth and I can take a breath on my own, I will fight and do what I can to survive, because I am a fighter and a survivor. My personal problem with "lost sheep" is his character as a human being for saying "If I can't eat, drink, and have sex when I want, then it's basically over." to me that is very shallow and immature. But he has a right to say it, as it is his life, BUT I have a right to point out my opinion of what I think of him. And if he doesn't like hearing my opinion or others then he can go to another site where members are censored.

 

- Epoman

[melshell]

This topic has really bothered me since I began reading it a couple of days ago. Maybe some might feel that I'm not qualified to have an opinion, since I only recently started dialysis, but reading back over what I posted, I'm not satisfied with what I wrote. I think initially I was angry with what lost posted because he appeared to be so arrogant and self centered, and immature.  His posts also angered me because I felt like he began to question and attack other members who had chosen dialysis, and have successfully managed to have a satisfying and productive life.

Others here have a way with words, usually my forte', but as of yet I've not been able to adequately reply to any of the threads to my satisfaction. I used to be "quick witted", and although not judgemental, very opinionated. I always felt like I atleast had an idea of what I thought about everything...atleast I've always kind of known or believed that my ideas about things always generated from the same sound, proven, predictable place. When I look back at the choices I've made, or decisions I arrived at, I've always been clear about why I made them.

Maybe my choices weren't sex, drugs, and rock 'n roll, but I was equally as passionate about my convictions: love, laughter, family, fun. I've tried to live honestly, respectfully, with integrity and character. And, before dialysis, knowing that I had CKD and would probably end up on it, I was adamant that I would positively refuse it as a course of treatment when the time came because I could not even IMAGINE any quality to a life that revolved around extended illness, the type of restrictions that are involved, or the idea of being dependent on some type of machine-I just knew that it wasn't the life for me, that I couldn't possibly live that way.  Before dialysis, before my kidneys failed, I thought I was highly intelligent, well rounded, and experienced. I would have argued with anyone that I had lived a full life, and I still believe fully that should I die tomorrow, I will have lived a full life.

It has occurred to me the last couple of days, that this whole process for me personally has been like peeling the layers of an onion. Before I really even allowed myself to learn about dialysis, and the ability to continue a productive, albeit altered, meaningful life, I came to the determination that it wasn't worth it in my opinion. Thankfully, I discovered IHD, and I began to read about people who were making it work. I met people who still had alot to offer, who were funny, encouraging, who had been through hell, and had continued or were continuing to battle. I met people who'd just started dialysis, or were about to (same as me), and others that had been on all types of dialysis for years. When I came to IHD, my knowledge of dialysis was that it was a death sentence. Everyone I ever heard talk about it, or the people I knew personally to be on it, were sick or tired all the time. Their spirits were broken by a life that revolved around going to a clinic three times a week for hours on end to have their blood cleaned which was a grotesque, smelly, painfully humiliating existence. I wasn't even aware that peritoneal dialysis was an option, or that any dialysis could be performed at home!

I have the members to THANK for opening my eyes to a whole new world! I'm not saying that I LOVE dialysis now by any means- IT SUCKS!! I HATE IT!! I hated having to have the cath inserted, I hate that it's there! I hate the pain, the discomfort, the inconvenience, the constant care that's required... I hate figuring out how to dress and bathe all over again to accommodate the tube! I hate trying to figure out fluid balances, constantly monitoring my weight and my blood pressure, and trying to figure out what strength I'm gonna use every night! I hate that there's always a chance that the exit site will become infected, or that I'll get the dreaded peritonitis!! I hate the monotony of going through all the motions to get connected EVERY SINGLE NIGHT OF MY LIFE until, hopefully, I get a transplant that may or may not last! I hate that no matter how much I try to anticipate any and every single thing I may want or need while I'm hooked up and make sure that it's gonna be within reach, that it never seems to fail that something remains to be just outta the allotted distance! I hate that although I feel alot better than I did pre-dialysis, I still don't feel all that great! I hate that I haven't been able to work, and that we're struggling financially. I HATE that my life and the lives of the people that I love have had to change so drastically to accommodate my health, and I hate that I can't seem to find that happy go lucky, caring, considerate person I used to be, and more often than not, I find myself apologizing over and over for snapping at the people who love me, and are only trying to help. I HATE being dependent on a machine period, and I get disgusted and depressed when I'm tethered to it. What I hate the most is waiting...Patience isn't my strong suite!! FINALLY, I hate that I seem to be soooo angry all the time, and that I go into these dark places that I never even knew existed, and lose my patience so quickly with people who appear to be utterly clue-less! (Sheesh, guess I went into a bit of a rant there!-Sorry!!)

Getting back to what I was trying to say, it's been like peeling the layers of an onion...It hasn't been anything I've looked forward to, and I've shed some tears. On the other hand, it hasn't been anything like I've expected either. I've met alot of great people that I otherwise might never have met, and learned alot reading their personal experiences. Because of the members on this site, I feel better able to deal with what's going on with my health, I am better informed about what to expect due to the experiences others have shared, and because of the wealth of knowledge and experience of the members on this site, I know that I have access to a wealth of information from people with real life experience, all I have to do is ask, and I have somewhere to go and someone who will always be there when I'm worried or scared that will have a word of encouragement to offer, and others who are ready to endure my setbacks with me, or are ready to celebrate with me when my good news comes.

As for whether if it's worth it or not...? I guess it depends on how you feel personally about whether you believe living in general is worth it or not. As for me, I just keep peeling back the layers!

[DeLana]

Lost Sheep,

I haven't read all of the replies, and you may think I'm out of line for even commenting here since I'm not a patient (I'm a dialysis nurse - 5 years outpatient/clinic, now acutes/hospital).  But here are my  anyway.

You sound to me like you're clinically depressed.  It's common, it's often triggered by a very stressful event (starting dialysis certainly qualifies), it's nothing to be ashamed of and it's very treatable (and also, sadly, very undertreated).

Yes, ESRD is a difficult diagnosis to come to terms with; I don't know for how long you have known that you would need dialysis, if it was rather sudden and unexpected it would be a terrible shock to absorb.  And initially it seems very, very overwhelming.

Right before starting dialysis patients usually feel very, very bad because of the untreated uremia.  When they start dialysis, they begin to feel better and this will continue for about 6 months (until they reach the maximum "improvement" and level out).  You haven't been dialyzing that long yet, so expect to see improvements in how you feel!

Also, you probably haven't had time to consider all your options.  You are not limited to get hooked up to a machine in a center three times a week; other modalities (options) for you to consider are peritoneal dialysis (PD) - done at home, usually at night; home hemodialyis, which usually requires less frequent and/or shorter treatments than PD; and of course a transplant - being young will likely qualify you for one (and if you say, I don't have a willing donor - realize that most people don't, but there is a national list for unrelated donors.)

Please get evaluated for depression and/or start treatment (medications and/or counseling).  I think it will make a big difference.

Also, listen to the good advice you have been given by the members of this forum; many have been on dialysis (or have had a transplant) for many years and are living very fulfilling lives.  The same can be said for many of the patients I have personally known.

I wish you the very best!

DeLana   

 

[Ken Shelmerdine]

I've been following this thread for the last few days without comment so here's my two penn'orth.
Lost Sheep, by the tone of some of your posts you obviously feel that we on this site have nothing to contribute to you so why do you continue to post your arrogant self obsessed rhetoric. Generally on this site we offer moral support and information and even some humour for each other. We are here to help each other as much as possible. It seems to me that nothing you have said in your posts has been of any value or comfort to anybody. Don't missunderstand me in that I don't think we should ever stifle debate on the kind of subject matter you have raised but it is your sneering disrespect and contempt for us which I find infuriating. Your sole motive seems to be to try and make us feel as miserable as you for which I assure you of your complete failure in that respect. Maybe you are clinnically depressed and not the narcissistic self pitying  hedonist that you appear to be  and If so then get help. Your contribution to this site is just so tedious so why don't you just do one?   

[paris]

I agree we all need to decide how we are going to live (or not) with kidney failure. I didn't care for Lost Sheep saying unkind things to a community he really hadn't taken time to get to know. Those who criticize Epoman and aren't comfortable with the IHD forum, should find another that more suits their personality.  I for one, come here to voice my frustration, learn from others and receive support from those who understand.



  Sluff--- the vision of the "two chicks" thing , well, let's just say the other teachers at the private, Christian school I teach at would be speechless!!!!!   My kids all laughed until they cried - too funny

[meadowlandsnj]

As for whether if it's worth it or not...? I guess it depends on how you feel personally about whether you believe living in general is worth it or not. As for me, I just keep peeling back the layers!

That really was a great post--it put into words what I was thinking so much better than I ever could.

 

Donna

[meadowlandsnj]

I support Lost Sheep 100%.  This board is called "I hate dialysis," not "I am so afraid of admitting how bad my life on dialysis is, that I forbid anyone else to say anything which may open my eyes."  Epoman founded this site so that people could express their true feelings about dialysis without the usual censorship we have to endure from the medical profession, which is always trying to "Disneyfy" our experience and get us to chirp that everything is wonderful, so they will feel powerful and good, and so society will not have to admit that it should do more to address the plight of dialysis patients.  But it is then extremely ironic to find that the same instinct to paper everything over, to cover everything up, so that we can all continue whistling through the cemetery like children afraid of the dark, and never admit how bad things really are, because we are not mature enough to face up to the real difficulties of the situation, and have to take refuge in overly optimistic fantasies, recurs, despite the freedom of this forum, as a result of what the patients themselves seem to need, rather than the institutions which seek to dominate them.

Let's admit the facts rather than try to hide from the truths Lost Sheep dares to speak, but which few here dare to hear.  The incidence of clinical depression among dialysis patients has been measured at rates ranging between 5 and 60%, depending on the study population.  Anxiety is reported in 50 to 70% of dialysis patients. (Data from Jeremy Levy, et al, Oxford Handbook of Dialysis (Oxford: Oxford University Press, 2001, pp. 64-65.)  20% of dialysis patients die from voluntary withdrawal from dialysis (Levy, p. 530), and 5% of dialysis patients actively commit suicide, a very much higher rate than in the normal population.  Levy concludes: "It is not uncommon for patients or family to feel that the quality of life on dialysis is so poor that they would rather die." (p. 534)

Maybe those are his truths.  My truth is that it's do dialysis or I die.  I have to try to make the best of it until I get another transplant.  I have a life I happen to like, no matter how worthless or mundane he thinks it may be.  I really don't think my life is that bad.  I have family, friends, IHD, books, music, I have the whole world. 
I had a really rough treatment yesterday, I felt sick all night but I'm still here. 

Donna

[RichardMEL]

I was interested in Stauffenberg's response supporting Lost.

I think there are two seperate issues in this thread - one revolving around Lost's right to speak his mind, and the other revolving around the reactions (positive and negative) to the content of his posts.

To the first post, I haven't seen anyone try to deny him the right to post his views and I do not see any editing or moderation by the administrators to his posts. So from that point of view, he has been allowed to post what he likes. I support this and think it is reasonable.

Yes, some of us disgaree with the gist of his posts, or the view he seems to be expressing. Again, I see nothing wrong with that. We are all here for support and to debate the issues such as this. I personally support anyone wishing to give an opinion that hopefully isn't too personal in content (eg: person X is dead flat WRONG because....).. Opinions, in my opinion (lol), are never right or wrong.. they are just people's views and should be able to be expressed.

Finally I don't think anyone here LIKES dialysis or facing ESRD/CKD. It's how we choose to respond to our situation that is the core of this argument. I wouldn't deny someone the right to quit (or not start) treatment... we should all be masters of our own lives and our own destiny. I have already commented in too many responses my personal thoughts on Lost's own definition of a good life, and that's fine.. but I sure as hell wouldn't tell him to NOT give up if that's what he truly wanted. Seems to me one of the ultimate definitions of tryany would be losing the right to decide our personal destiny (eg: to live or die). So I guess you can all tell what my stance on Euthanasia is!

I am not sure if Lost will return here given the tone of his last message, and whatever he does I hope HE is comfortable with it... again as I posted earlier I actually feel more for those around him (eg: family) who will be left having to deal with that... but well, he wouldn't be the first to do what he seems to be contemplating. Sadly...

[Sluff]

Every man or woman is in charge of their own ship.

This may sound a little cheesy but I like the quote "It ain't the size of the dog in the fight, It's the size of the fight in the dog"

Only you know where you are at.

 Lost Sheep if your still lurking, may you be at peace with your decision whatever you decide.