I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: LarryG on February 08, 2011, 08:41:36 AM
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I hate dialysis so much. I will do what ever it takes to get out of there. Someone wrote they had a good day at dialysis. I can't imagine what a good day could be. Every day is a bad day or it can be a worse day when things go really wrong. Some people seem to get comfortable with their treatmenets and for some reason or anothere make no effort to get the hell out of the clinic. Let me die if I become complacent and not try to end the misery. If you are able to get a transplant make every effort and explore any option. Sorry just had to vent.
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"Good" is a relative term.
For me, a "good" dialysis session was one in which all of the following conditions held true:
1. The clinic was not running late due to problems with earlier patients, so I started my dialysis on time.
2. Neither my tech nor my nurse was sick with a cold.
3. I did not get infiltrated during cannulation of my fistula.
4. There were no conductivity problems with the dialysate bath which could slow down my session.
5. My blood did not clot during the session, so all of it got returned to me at the end of the session.
6. After the session, the punctures stopped bleeding readily, enabling me to leave the clinic quickly.
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I understand what you are saying. Being in the place and going through the process sucks but there are days when everything goes wrong and a bad day becomes a worse day.
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Larry I think we've all been there. While I was pretty stable on dialysis, I too had some of those days with bad cramps, crashes, blood leaking, whatever. That sort of thing can happen. It is not fun at all however I would suggest if that each and every session is bad then that's more an issue with the treatment regimen/meds/setups etc than dialysis itself because in general dialysis should be a dull monotony of boredom having to sit there. Most of the time on dialysis my biggest concern was what TV show to watch.
I'm sorry that you're having such a tough time with dialysis - have you spoken to your neph regarding the difficult treatments you're having? What about the nurses and techs at your unit regarding this - there must be some way to stabalise your treatments so you are comfortable.
btw I don't think anyone ever becomes "complacent" with dialysis. Nobody likes it. I have to keep in mind though in my unit there are a number of patients for who that literally IS their lives. They cannot get a transplant (perhaps they are too old for it, or they have other complications) and yet, many are stable and dialysis helps them live their lives quite fully.
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Larry, certainly do concur that it is a terrible process indeed in so many senses, and I too absolutely totally hated it .
BUT, came to a point where I realised that but if it is something that you are going to have to do, irrespective of whether you love it or hate it, maybe it would be kind of easier of you replayed the experience a bit? The first time I went, I decided a priori that it was going to be detestable, and I stared resolutely at the clock for three hours, thinking how utterly terrible it was. Well, indeed it was unbearable... And it continued to degenerate fast....!!!
After a while, I tried to reprogramme the labels a bit - it sounds really trite, but I made up mind game challenges such as - "today, just connect with at at least one person in this centre", "think of just three things about this experience which are not utterly aversive", "make up a romantic life story for each of the techs in this room", "if I hosted a dinner party for all the people present, who would I seat with whom" and such like - really just exercises to make a more pleasant assocaition in my mind. Did it work - well, sort of, but it was certainly better than staring at the clock!
Faiiling that, I just read books in a desperate attempt to remove myself as far as possible from my body and its issues. Good luck!
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Finding distractions is a great idea! I used to chat to the staff about their lives and we'd share stuff, or talk about dreams of travel or whatever, or I'd just watch TV/movies on my laptop and help pass the time that way. indeed I'd whisk myself away from the gloomy dialysis unit by watching something like Hawaii Five-O and be diverted for 45 minutes by bikini babes and mildly interesting cop banter.
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Don't get me wrong I am a very intelligent man. I understand my limitations and the process I have to live to have a halfway decent life. I stick to the program and I do what I have to do. Sorry but it still sucks. I know it is part of getting old and having to deal with a deteriorating body. Partly due to my own fault I never saw it coming and should had sought medical attention earlier in life. Water under the bridge. I had children late, I had a business that I had to give up and my active life style ended. Putting a son through college and lucky to had given him things I cannot give my daughter who I feel has been cheated by my illness and this after their mother had colon cancer and has survived to see all our savings depleted because of illness and debt. To have had to fight for Medicare and aid for medications. I am tired of being tired. I hate when my BP drops,the tightness in my chest. I hate when the tech infiltrates and the hematoma, the every three months to the VEIN Clinic and the angioplasty I hate the entire process. I hate the people at the clinic and the needles the mutilating effects constant needle sticks have done to my body and everyone else. I won't go into the other problems,skin,eyes,etc. I cannot stand seeing my own blood running through the tubes and when I try and tell friends or family they shutter with repulsions when you mention blood and needles. I know people have to suffer to get well but with some illness you treat and there is an end to a means and for some of us this process just drags out and I am really sick of it. Then lets try and get a transplant,not that is an easy task. One in Six African Americans are lucky enough to get a transplant slightly better for Asians and Hispanics.Good to be Caucasians at least they are 50 percent. And economics has a lot to do with it. The waiting list in Illinois is 5 to 7 years. I have seen more patients in the clinic get buried than them getting a transplant. Please I know about the health difference,age and everyone is different.I know some people just can't get transplanted and trust me I know some who won't and just don't care. I do have friends at the clinic and a lot of the staff I have an okay relationship with but I hate it. I am not a good patient but I know what is best for me. I am not going to give up but this is hardly a life and I will suck it up and deal with it. I do it for my children.I still want to see my daughter graduate and I will do what ever I can to get a transplant as soon as possible.
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LarryG, my heart is breaking for you - it seems the burden you are bearing is so very heavy. I am struggling to find anything which imight make your situation more tolerable. Suffice to say, I am keeping you so very foremost in my thoughts and prayers.
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Have you thought about doing dialysis at home...... then you can do what you want and control the process...
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I have no desire to do home dialysis.I have been asked about this option before.One I do not wish to have a tube sticking out of my stomach and two I would never think about sticking myself.I refuse to look even when they stick me at the clinic.There is no way I want the stuff around me. I hate it so much. I have watched on Youtube the whole set up and the process and even have watched the in center video's and they all repulse me and the fact this is what they do to me is so depressing. I know all the stories about people who live with it and deal with their lives and are happily positive.Thats all fine and well and I am sure there are things worse in life. In the end I put my pants on and tighten my belt and I deal with it. However I am not a happy camper.I will not get use to it and it motivates me to strive for getting a transplant.
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For the first few years of dialysis I adopted a philosophy of "it won't go away, so there is no use whinging about it". That got me through a few depressive days. These days my greatest confrontation is the constancy of the treatment. There is is simply no holidays. I try to overcome it by being busy whenever time allows. At the moment, I am part of a travel club that meets every Monday and takes a short bus trip to a rural area for lunch. I am also blessed with many friends who meet regularly for dinner. I do know of younger members who play team sport and another who loves volunteer work. So I think the answer might be to surround yourself with friends. Those who understand the Myer - Briggs personality framework will realize that I am obviously an extrovert who needs to express frustration to someone else. Introverts tend to internalize problems and maybe study/knowledge of this disease may also be an answer. BTW, I am ESTJ on that scale. To add, don't be too proud to seek professional help and finally keep venting on IHD. It got me through some tough days.
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Murf - you put that well. That is something I found also - you couldn't have a holiday from dialysis! Yes, you can 'go on holiday" with dialysis (to varying degrees) but it's still there even if you physically are somewhere different. Sometimes it used to get me down a bit when my nurses would be planning their next vacation overseas or even camping for a week or whatever. And I'd be thinking "oh I so love hearing about this, and talking about it, but there's a bit of me that just wishes they would shut up because it reminds me there's no holiday from this machine" - I think your suggestion is absolutely a great one. For me, I did short little overnight trips to nearby cities, saw friends, and spent time at work (which was as much a social thing for me as it was about getting paid and doing a job). I would have gone insane if all I could do was sit at home and stew thinking only about medical/kidney stuff. This way I could focus on more constructive things and tended to put dialysis to the back of my mind and not let it dominate my life.
As I used to say "I do dialysis to live - not live to do dialysis!"
To Larry - I can understand your not wanting to do home dialysis. Many patients prefer the relative freedom it gives them to be able to control their treatments and do it when they like rather than waiting on staff in centre who may or may not be on time/busy/lazy (whatever) or simply may want to do their dialysis at night rather than take up their day hours. Everyone's different and what works for one may not work for others. I never used to look at the needles either and could never stick myself (even if my eyesight was good enough to allow it) and my cat wouldn't be much use to help with needling, so home hemo was never going to be an option for me, but I would have done it in an instant if I could just to allow me that more flexibility and control over my own treatments... but that's me, not anyone else. I understand where you are coming from. I guess you have to remember that dialysis is simply a means to an end (of living your life) rather than the be all and end all. D is supposed to support you, not consume you. Perhaps, as murf suggests, if you can find other things to occupy your time and energy and can fit in around dialysis, then you can focus on positive things and not have the medical stuff consume you.
All the best
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It is more than just the dialysis even though that is a large part but it also the residue effects as I have stated before. The economics, the retiring from my job the effects of what has happened with friends and family and the changing of my body. It is the after effects of time spent in the hospital, the vein clinics, and sorry guys I equally dislike hospitals and doctors and I have many. Traveling days are yes over, no more trips in the deep woods for those musky fishing trips.my fantasy of going to Europe,etc. Now with that said I do occupy my free time the best I can. I am an artist and I create all the time. During dialysis I draw. Dialysis does do you you don't do it. If you didn't do it you would be done in. There is a choice. live or die. The choice is hard at times but I dress myself and I show up like it or not.
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I feel a lot of what you're going through. I always HATE dialysis, even though there are good days, i.e. nothing goes wrong. Anti-depressants may help with the feeling of helplessness/hopelessness. I'm not a candidate for a transplant because of other health issues. The only thing worse than going to dialysis is NOT going because you feel so much worse. If you do have a chance for a transplant, keep that in mind and never give up!
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Gee I had to check the title of the group...I HATE DIALYSIS!! Sorry it sucks and I am glad it works for you as a "wonderful burden" I am sure if you poll a bunch of people you might find yourself in the minority. I stick to my opinion. I will do what ever to get off dialysis. For most it has been a distruption of their lives. I understand the benefits and trust me I use my time off very well when not needled up. Some other thoughts I will keep to myself. Bottom line is it still sucks and that's my opinion and no one elses.
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LarryG: After having a successful transplant that lasted 20 years but failed 2 years ago, sending me to dialysis, I REALLY hate dialysis and the time it takes out of my life. But like one of the writers above, I was brought up to not complain, so I just keep my mouth shut. BUT -- I totally envy you the ability to draw during the 3 - 4 hours on the needles. What a wonderful talent you have.
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I too was not brought up to complain but I was also brought up to not criticize until I know all the facts. I hate dailysis but that does not mean I do not tolerate, be patient and accept what goes on. It does not mean I do not try and live my life to the fullest but I will not be satisfied with the thought because I hate the situation so much I will not try and do something about it. I am getting listed in different states and different clinics and have posted in as many social networking groups as I possibly can. I demand fair treatment and the techs take care of me the best of their abilities. If I did not "Complain" I would be taken advantage of and I would not get anything accomplished and get respect. If someone is actually "happy" with their situation well I am happy for them but I will not be satisfied. If that is complaining well so be it. My opinion is as valid as the next person and there are a lot of people who see me as and example of how they go about their care. I am not criticising how someone else is going about their business but if some one tells me I have to wait 5 to 7 years to get a transplant...I know there is a better way and I am not going to sit around and settle for what anyone tells me that can or can't be done.
I appreciate that you like my art work. I work everyday at it. I have lost so much do to renal failure. I don't have to like it but I do make the best free time and my abilities when I feel well. I do see a better day.
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Hi LarryG , i get where you are coming from ! Ive been on this road for nearly 7 yrs and no chance of a transplant. I dont have any advice on how to get through it.I am like you i know the options if i dont go in. One thing i dont get is Henry P's comment ;' its a wonderful treatment that enables me to live a perfectly normal life' ...WOW !!! Firstly i have done both pd and hemo and neither are wonderful, how can treatment day after day with no cure be wonderful? Secondly , how the hell do you live a normal life ? If only for the fluid and food restrictions ? I was on restrictions on both treatments, even if i wasnt dialysis doesnt make you 'normal' it just keeps you going !
I can only hope you get a transplant in time and till then you find the will power to keep going in. :2thumbsup;
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Yeah, I am not sure what "normal" is. I have not had a "normal" life since I started dialysis and probably sometime before I new I had renal failure.I even wonder what feeling good is like. I feed myself even though half of my eating days are over and wanting to guzzle a pitcher of ice cold water is a no, no, but I am still able to wipe my bottom happily so I do have things in perspective.
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Yeah and you still have a sense of humour :2thumbsup;
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Seems like this is the "glass half full/glass half empty" thing. It is what you make of it.
Don't get me wrong; I have my "down" days too. Does dialysis suck? Sure it does. But it doesn't suck anywhere near as bad as being dead.
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Folks - I think what the above page or so of posts illustrates is the varying experiences of our membership AND their opinions. Everyone's opinion is valid here. Larry please don't think that anyone is trying to suggest you're wrong somehow in how you feel or anything like that. Clearly Henry has found a modality for him that really works - frankly I'm envious!!! I never loved dialysis when I was on it that's for sure, and I tried to do all I could to get off it - which basically wound up trying to keep my body in the best way I could so that when that call came I would be able to accept a transplant. Now that I have my new gift (nearly 3 months old) I also don't feel that my life is "normal" - after all transplant is just another form of treatment.
I consider that I still have kidney failure. I consider I am still being treated for it. Yes, transplant so far for me is pretty wonderful. No more machine. No more needles (not counting blood draws) etc and the food options are pretty much wide open again. However there's the anti-rejection and other meds I have to take - and they have their own fun side effects. Then there are the worries about ejection - sometimes a little twinge out of my kidney and I worry!! However I don't in any way HATE transplant or anything. I just recognise that my life is still not "normal" - I'm not cured or anything.. I am just in a much better place - and I will continue to do everything I can to keep myself here for as long as possible.
As was pointed out, Henry is doing CAPD and that's a far cry from hemodialysis. Everything has its pros and cons. I don't begrudge anyone who is coping well with dialysis. I was fairly stable on it myself and it was more that 15-16 hours out of my week that I wished I had back. Doesn't mean I liked it, but I put up with it because it enabled me to live my life and keep harassing the girls. I also recognise that many people's D experiences are far from as easy and straightforward as mine or henry's and that many have far harder times on it, and I wish it wasn't so.
Anyway the real point of this post is that all opinions and experiences are represented here - that's why we're a community and this is a forum.
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RichardMel, I understand that and I respect what everyone has to say. I know everyones experience is different and I only speak for myself. I have met people that have had transplants and I know what they go through. There are different situations you go through as I am sure you know that is different than being on Dialysis and I am willing to face the difference and the fears when it comes to a relapes and rejection of a transplant. I am not going into this without educating myself on the risk. I just know what I dislike and what I need. I also think it is different for people who knew in advance their kidneys were failing and they prepared themselves to what might was going to happen. I went into the hospital went into toxic shock and three days later woke up having been put on dialysis and I have had difficulties with it ever since. I know it is my problem and despite the loathing of my experience Only I know how much I have lost. But still I do make the best of it and my life. And I still keep my sense of humor. I still hate it but I deal with it......I got no choice now do I? Until I find a donor.
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That's absolutely the way I feel about it - there's nothing I can do about it - so I refuse to curl up in a ball and cry "why me?" and all that - that won't help anything, so like you I go with a sense of humour and try and see the positive side of everything and make the most of it. Hard at times, but I think it's the best way to go.
So, keep it up! :2thumbsup;
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As much as I say I hate it the most difficult time is when I am not in clinic and I have to anticipate going and the walk there. A six block walk at 5 in the morning and getting up at that time really can put you in an evil frame of mind >:D. Of course who I get in the revolving door of technicians and the possibilty of an infiltration plus BP crash, left the planet for a short time last week, but being with people like us who can trully understand what we go through does have a level of comfort.
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LarryG, while I accept what these posts allude to, namely that there are many perspectives, I must say that your experience really does echo some of my own - the truth is that it is really difficult to turn what is essentially a harsh and stressful experience, which is repeated three times a week, into something positive. I agree the before-dialysis part is the worst - the drive there, and anticipating what could and probably will go wrong, and the utter painful ennui, is a desert of despair. It keeps me awake at night in anxious anticipation! Wish there were some way I could make your burden - and all of ours - lighter. Wish it would just GO AWAY in some magical fashion.....
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It is not like I sit around waiting for disaster to happen. There are days when I feel pretty good and I show up and then disaster happens. When people tell me I need to sit back and take it not to complain and I know it is not my fault I get very angry. This doesn't mean I can't get better but I can try and make it easier on myself and be as aware as I can to insure myself good and adequate treatment.
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Really, I can't stand it when people tell me not to complain. I don't do it often, so when I do, I really, really need to get it out of my system! And I totally agree with the idea that the anticipation was the worst part. Rolling over to the alarm long before the crack of dawn so I could get the snow shoveled off the car in 30 below wind chill was NOT my idea of a good way to start the day. :rant;
Larry, you are more than welcome to post about how much it sucks. Epoman, who started this site, named it I Hate Dialysis because he did, truly and completely.
But try to remember, those of us on here who post, like Henry did, about trying to keep a positive attitude are offering a description of what has worked for them when they needed to get through the black spells. We are hoping we can help you figure out a way to find some small spot of light to focus on. We all worry on here about our fellow members managing to walk that thin line between being mad and disgusted with the process - and slipping over the edge into true depression. :cuddle;
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I suppose it's all down to how you approach things in a way. I could probably count on the fingers of my right hand the number of times I went into D dreading that some bad thing would happen. Most of the time I focused on wondering if nurse X would be working, or even that I couldn't wait to get settled in so I could catch up on Chuck or Fringe or something (yes it's true, I saved up TV to watch!). I tried not to worry about the what if's too much - not much I can do about it and I figure the stress of worrying about stuff I can't control wouldn't do me much good anyway. I'm not saying that those of you who dread each session for what could go bad are wrong or you shouldn't or anything like that - we're all different and I can ABSOLUTELY understand feeling that way, specially if many/most sessions are difficult. I guess, like Henry in a way, I had a pretty stable dialysis experience so the most I would expect is boredom. I guess that would be a fundamental difference.
I'm sorry for those of you that a) have difficult dialysis sessions on a regular basis and b) dread going - that would make the whole thing that much harder.
I too wish I could do something for everyone to make it better or go away.
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Well it is not going to go away. I know that and despite my dislike I know that and that's the problem. Doesn't matter if it is at home or in center. Part of it is being faced with your mortality and suddenly you are on disability and being chronically ill is hard to fathom. I have cried,cursed the heavens and been remorseful but more bitterly angry but believe it or not not dealt with depression. I will make it and I spend much of my energy working on getting that transplant.In five hours I get ready again to try and get through Monday to get through Friday and then start all over again. Hopefully there is a happy ending to all of this....maybe not. That's the scary part.