I hate dialysis to the point of stopping

[daveosaurus]

I HATE DIALYSIS enough that I walked out this morning. I hate my blood pressure dropping out every treatment and making me sick. I hate having to drive back and forth. I hate sitting in that chair for 4 hours. I hate thinking about the bills. I hate being given handy eating tips by the staff that I can't possibly afford. I hate having a dietician. I hate having a social worker who talked about doing an intervention. (REALLY? I don't think so.) I hate being told, "You'll get used to it" and "it's for your own good." I hate the thought of living like this for the rest of my life. I hate having to depend on government hand outs. I hate having no control or say in my life. I hate the thought of eventually getting jabbed with those big needles. I hate even having to know how to spell "dialysis." I hate having a catheter in my chest. I hate dialysis!

[cariad]

I hear you, daveosaurus. I wish I could tell you how to make it easier, but I share your hatred for having to accept Medicare and disability. I hope you can find some solutions so that it does not come to a point where you see no better option than death.

I would tell the staff (as politely as you can manage) to save the tips and platitudes, they are not helping and are putting you off. I know enough about dialysis to know that you should not be crashing every treatment and that the clinic staff needs to sort that out immediately. It is their job! Demand that they do it. Thinking of you!

[Lillupie]

um, wow,
 I dont even know what to say that will be totally 100% encouraging to you. I am sorry. The one thing to know, is that you are NOT alone. I can say this with all honesty is that I am totally 100% with you and I do feel the same way.
 How old are you if you dont mind me asking? Are you new to this? I have been doing this for 4 years. Do you have any children that depend on you?
 Are you able to do this at home? There is another method other then with big needles. It is PD dialysis. This is what I do. I have a cathater in my stomach, and I get way less infections then the permacath gets. I started out at 4times a day for 30 min each, and now I am on the cycler. So now my days are pretty much free. The food is a lot more liberal on here then on hemo. I can eat potassium foods. Every time you do dialysis it driains the potassium. The phos limit is still the same, but you dont have as much as the salt, potassium, and fluid restriction as you do on hemo. its not a free for all, but PD is a lot less restrictive. And I dont have to drive to a center. THe good news is you pretty much feel decent/the same on a daily basis doing it at home.
 The bills are a real problem at the moment for me. In June Im getting married, and weddings are costly. I have a 5 year old daughter.
 My problem is im 28 years old. I graduated from college 3 years ago, and still havent done anything with my degree yet because of this. Well I havent had much work under my belt because I have been in school most of my life, and I really dont get much disability because of that.
 The diet is the real problem for me as well. My mom is not a meat eater (who i live with) and complains of how costly the meat is.
 Im not going to lie, it is hard. I know we dont get much money, but look at it this way. atleast you are not 100% healthy and cant find a job. Im still bringing in something. I mena i could technically be a stay at home mom and not bring in a penny and actually live off the system,
 So, look at it this way. Plus you can come here and vent all you want.

Lisa

[monrein]

Dave, I'm glad that you can come here at least and really talk about how bad this is for you...it's not much but it's something and many of us have felt a little or even a lot like you do at different times. 

I agree with cariad that the two things you can possibly change are 1)  NOT crashing all the time with your BP bottoming out and 2) NOT having to listen to simplistic suggestions from staff that show that your feelings and understandable despair aren't being heard.  They may be feeling helpless and so say whatever pops out but sometimes we don't need suggestions (unless we ask for them) and it would be nice if they could just listen and acknowledge how tough this illness and the treatment can be depending on a bunch of different things.

I wish I could be more helpful.   

[Cordelia]

I am so sorry.   

Someone else mentioned home dialysis. I was thinking this too. Would this be an option for you? Then you don't have to worry about the time it takes to travel to the hospital back and forth.

[Riki]

I know how you feel.  I spent a year trying to figure a way to stop dialysis without anyone knowing.  I was on PD at the time.  I knew that if anyone knew what I was doing, they'd try to stop me.  Obviously, I wasn't successful, and now, almost 6 years later, I'm glad I never did figure a way.

As was suggested, PD might be a better option for you.  You have less restrictions, and you are more in control of your own treatment.  You can set your own schedule, and if you use the cycler, you hook up to it at night, go to bed, and disconnect in the morning.  You can keep a job, and live life pretty much the same way you always did.  I worked for 4 years on dialysis.  I left my job, not because I couldn't do it, but because my heart wasn't in it anymore

[Lucinda]

Hi Daveosaurus

I was SO where you are when I first started dialysis.  I had a lot of issues with migraine and allergic reactions before they sorted out the problem.  I use to want to kick the social worker in the head every time they tried to tell me how I should be feeling and I just use to tell the dietician to get stuffed.  She use to keep telling me the foods I could eat and I couldn't keep anything down at all.  I felt very much like you when I first started.  Now I am 2.5 years down the track, I do home hemo - we are allowed to do it without a partner here in Australia - and I have never felt better.  I am doing a lot of exercise, back working full-time and my dialysis has been well under control for the past year or so - to the extent that I am not even going to consider transplant.

I know that right now you can't see past the crap - and really that is what it is.  You feel lousy and you don't  think you will ever feel well again or have the same coping mechanisms you had in the past.  But you will.  If you look back on some of my old posts you will see how badly I handled everything in the start.  I just don't recognise that person I was back there any more and unless it was all there in writing, I would never have thought that could possibly have been me.  Time, the right dialysis, stability with my treatments and feeling well have all contributed to how I now look at my situation now.  My mind back then was one directional.  It didn't matter what anyone said to me about getting use to the dialysis and how I would cope better down the track, I did not listen.  I was beyond being consoled.  Now I am going to try and tell you the same thing.  Hang in there....it does get better.  I used Kit's bat a lot back then.  You know, this one http://ihatedialysis.com/forum/Smileys/classic/Kitkatz_Big_Stick.gif - and I know you probably feel like using that on everyone right now.  Trust me, feeling happy and positive again is not too far down the track.  I think everyone has been through the way you are feeling at some stage during their treatment.  When you come out the other side, you will be amazed at how well you can feel and how normal life can actually be. xx

[daveosaurus]

Thanks to everyone for their words of encouragement and suggestions. I think I would do better on PD. I've researched it extensively on the internet. I've mentioned it to the staff as well as feeling lousy at the end of my treatment. I can barely walk when I get done. I think they are taking too much fluid off. But it's like they don't even hear me. If I go back ,Wednesday, I'm going to have to start yelling. Don't know if I care enough anymore to do that. I'm almost 56 years old. Been doing in center Hemo for  two months. The only family I have (that cares even a little bit) is a younger brother and a nephew but they have their own lives. I used to be a caregiver to my parents. But my father died with Alzheimer's last November and my mother had a stroke that left her a vegetable in a nursing home. I can't help them any more and I feel like my job, my obligation, is done. I should be able to rest now without putting up with idiots at Davita. I know I only have two options; death or dialysis. Neither one of those choices really appeals to me. Wish I could have a beer ...

[The Noob]

geesh dave 

if you can do the PD, go for it. if DH's placement had been done correctly, it would have been the way to go.
he is 58. i can't imagine him trying to do this solo. he would never have made it.

i wonder sometimes if there should be a "singles" connect site on here. only those who've gone through it or done the caregiver thing can understand.
dang dave  for you brother

[jbeany]

Well, I can't say much more for encouragement that hasn't been covered. 

I know you are tired of suggestions - but here's one from someone who at least knows how it feels.  Learn everything.  And the first lesson to learn is that you have the right to control how much fluid you take off and what your dry weight will be.  Granted, the first couple of weeks are anyone's best guess - but you've been on it long enough to be past that.  If you aren't coming in totally overloaded on fluid every session, there's no reason for crashing repeatedly.  Tell them what weight goal you want to aim for and politely and repeatedly insist on it.  If that doesn't work, then get PUSHY! 

Just in case though, I'll share one more thought - Pre-transplant, I was one of those unfortunate people who couldn't even handle having the full amount of allowed fluid pulled off in one session.  My doc would have been fine if I came in with a 2L fluid gain each time.  My body couldn't handle it.  Once I got past 1.5, I was pretty much going to crash no matter what.  And yes, weekends were a total *itch for being thirsty most of the time.  But it was be thirsty or crash and feel lousy for the day after D as well.  Hopefully, this isn't you, too!

[aharris2]

 ...and Dave, you can have a beer! There is nothing about simply being on dialysis that stops you from having a beer.

 

[RichardMEL]

re the beer - well there is a potassium content to beer, not to mention the fluid amount, but I do agree in general that a beer on D is OK. I have done the traditional aussie thing of watching a cricket game on a hot summer's afternoon with a cold stubby..... but I digress.

Dave - welcome. It's a tough spot you're in emotionally, physically and financially. I can understand that.

I will add to the list of perhaps unwanted suggestions.

It concerns me that you are enduring low BP at the end of every session. Perhaps they are taking off too much fluid as you suggest. You haven't indicated how much you are taking in between treatments, which may be afactor (eg: if it's too much), but I would definitely demand via your neph that your dry weight be recalculated. Suggest a crit line (a.k.a. BVM). If it's not fluid, there must be something else causing this because in my view this is not a normal situation for a dialysis treatment - and it shouldn't be acceptable to endure it session after session without appropriate investigation.

Yes, dieticians suck and they often set unrealistic ideals. I found that, for me, it was all about moderation. Rather than "you can't have beer/pizza/chocolate/cheese/<whatever>" dead set rule, it was look, be aware of what's high in potassium, or calcium, or whatever and little bits are ok, or if you will have some pizza, take an extra phos binder for the cheese, and be thoughtful of the K in the tomato etc, and next meal, have little or no(as possible) of that stuff, to balance it out. That way I could still enjoy the odd "treat" or even more normal foods, but manage my intake appropriately (including not cooking with or adding extra salt, and stuff like that) and as long as I was diligent with my binders and fluids I fund my labs were pretty much always good. The odd hiccup here and ther, as it's always a balancing act, but in general it was good. I never liked hard and fast "you shalt NOT eat..." - which seems unreasonable and ridiculous.

For me,  dialysis hlped me live, but without any quality of life what's the point? if I coudnt' enjoy things, then yeah... that sucked. Sure, don't be an idiot, but you don't have to forget or stop everything because of D.

I realise you probably read that above and think "yeah, I have no quality of life" and that may well be how you feel. I can't begin to even try and figure out that kind of question for you. You didn't mention if you may or may not be a candidate for transplant, or anything, so I don't want to say D may not be your lot for the rest of your life, but what I*can* confidently say is that what often helps me is to think about the positive things I have. Even if it's something small, like being on D allowed me to spend time with my cat, or see my mates at work, or heck enjoy a sunset or checking out a hot girl(who I'd never have a chance with!  ). Now for me I had the goal of transplant that definitely helped me going. I do not know if you have that, but if it's even a remote option, then it's something to consider. At any rate think about what you enjoy in life, what hobbies/friends/things keep you motivated? How can you enjoy these things with the aid of dialysis?

I'm not going to argue for one second sitting in that chair with needles in your arm 3 times a week is easy, or fun, or that it doesn't impact in life in a serious way, with resitrctions, pain, difficulty etc, but I firmly believe that dialysis does not have to dominate one's life and that you can live with it, and some people can even thrive (just take the sexy Lucinda above... I've met her a few times, and she's one driven woman!!! she's not letting that darn machine get in her way, and I'm sure you can follow that example - specially with more stable treatments hopefully you will feel more confident to face life's challenges.

At the end of the day it is your life, and your decision as to what you do. I would implore you to discuss your BP issues at treatment, and even your concerns with your treatment by the staff, dieticians etc with either the facility administration or your nephrologist, because they SHOULD do something, and don't let them just brush you aside. You have legitimate concerns in my view and they should be addressed to your satisfaction I think.

Hang in there mate. I did 5 hour shifts in that chair - I do know what it's like.

[daveosaurus]

Yeah, I'm going to start screaming about all the fluid they are taking off. I know it has to be too much. It has been 5 days since my last D and I feel great! Best I've felt in some time and I'm even peeing regularly again. At least a litre per day. I hate to go back for more D today because I'm going to feel horrible afterwards.

[Rodneyss1]

Please hang in there and know that you are not alone. I agree with Richard when he says no one looks forward to sitting in a chair, with needles sticking in your arms. It sucks!!! We are here for you, brother!

[RichardMEL]

Dave - please be careful. While you might be peeing (and 1L a day is a LOT) are you observing any restrictions? Also without dialysis toxins are building up in your system. 5 days is a long time to go between sessions. You do need to be careful.

I'm glad you're feeling well, but if your kidneys are at the stage where you're needing D, it's likely time away from D and feeling good will be short lived. Of course, you may have some kind of improvement in your function happening(which would be awesome, as rare as it is) and you should be having regular labs done to see how you are going. Why not talk to your neph about how you are feeling so long between sessions and that you're passing heaps - there could well be a good reason for it.

[Quickfeet]

Dialysis certainly sucks. I do pd 4 times daily, but that was not true in the past. There was a time when I was doing D only 2 or 3 times a day instead of the prescribed 4. Oh and I loved skipping my pills. I was determined to erase myself from the world, one way or another. It took a year or so to deal with all the problems and changes that come with kidney failure. But now I am so grateful I didn't get my way. I still struggle, my life will never be the same. But I have a life again, one I had to fight through hell to keep. So I say good luck to you.

[Shona_]

Nothing new to add except, like other previous posters, I (kind of) understand where you're coming from.

I'm based in the UK so don't worry about bills etc but when I was doing haemo I felt like crying (and did on many occassions)

I hated being stuck for 4 hours in hospital, and then feeling awful for the rest of the day. Plus I'm only 23 so being the only person under 65 in the unit was pretty depressing. And on my really bad days when I was already on the verge of tears, a nurse would say something daft like "oh whats wrong?" or "cheer up!" ARGH!!

I'm now on PD and would deffo recommend it if that's a possibility for you? I've only done it for a few weeks but I don't feel run down like I did after HD plus its freed up my days a lot more.