I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: mmmmdeedee on August 03, 2006, 06:18:10 PM
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Do you guys get those days where you just don't want to do it anymore? Tired of lugging the heavy bags into the bedroom, masking, priming, re-prepping the exit site, etc.?
It may be the heat but I am just so through with this. I am tired of it all and would love to quit. And I've only been doing this for a little over a month now! Is that crazy? I hate to be a baby. Just venting - sorry.
Dee Dee
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That is exactly what you need to do and what this community is for! When you got to vent, please vent! You are in a place where people understand exactly what you are going through.
You are not being a baby. It gets to you, whatever kind of dialysis, it gets to you. You remember the freedom of living without dialysis.
But, please don't give up. Vent when you have to and then just keep on keeping on.
You are in my caring thoughts as you go through this. And you will go through it and do well.
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One step at a time. When you get the feeling that says I do not want to do this again, do one step at a time. Give yourself a treat every now and then for just doing it all. Keep itup. The people say that PD or the cycler is better than in center hemdialysis.
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I feel that way a lot. I sit in that chair saying "I can't believe I'm having to do this." >:( I'd like to quit too, but I'll wait until something else happens to me like cancer.
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Rerun, that is what I figure. In 2004, the dialyzers were causing an allergy that looked like lymphoma. That would have sucked. How do you do dialysis and chemotherapy at the same time? No f*ing way would I do it.
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I remember doing exchanges 4 times a day and it seemed like it was a never ending repetitive thing. It got tiring fast. And even when I was on the Cycler .. I just got so tired of lugging the 5L bags .. setting the machine up wasn't as bad but the lugging those bags .. I just got so tired of doing that! But the freedom .. it was worth it!
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I did the four bag a day exchange for 12 years. For me 10x better than Haemo that I am on now. Had it nicely worked around my work hours. Had a 2 hour lunch break to get to home and back. Plus traveling expenses to do it. Never really had time to think about giving up on CAPD. But on haemo I think about every time I walk onto the unit. I have a couple of times missed a dialysis session. Got to the Hospital, just turned around and gone back home. Than felt like crap and could not wait to get on the machine. I seem to do that on a Saturdays. So thats Thursday till Tuesday with no dialysis. I felt ill. If I could, I would go back on CAPD in a flash. But EPS put an end to my PD. So just stuck with Haemo until Transplant or until I die. I suppose at some point we all think about stopping dailysis, but the other thing from dialysis is not very nice :-\
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what is EPS?
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DeeDee I am sorry you are having a bad week. I'm sure setting up, masking etc is a genuine pain in the arse. I am not a patient and can't really feel what you feel, so I'm not going to give you that line...I hate that philosophical BS too...just hang in there! The heat wave has broken and it is a beautiful summer day. Go get a manicure or a pedicure today, do something that you like to do!
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Thank you all. Believe me, I realize that there are many others that have it way worse than I do. I started getting sick early on and spent many weeks at Children's Hospital in LA. So I've seen a lot of stuff happen to a lot of little kids. Bad stuff. So I know relatively what I am going through is nothing.
But that doesn't stop this from sucking.
I am better now. Yes, the heat wave has broken and I live near the beach so the weather is beautiful. Another hting to be thankful for! I have a ton of friends who would do anything for me as well as family.
And you are right. CCPD is better than Hemodialysis. Either way it's a pain in the behind. Hopefully we all get through this with as little inconvenience as possible, with a little humor, and some dignity.
Thank you.
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Hopefully we all get through this with as little inconvenience as possible, with a little humor, and some dignity
Well I hope the quote worked okay.
Anyway, amen to that statement!!!!
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I feel like that a fair bit, Im sure everyone does. You are lucky though to be able to be doing PD, as it is much less effort than hemo. As much as I hated it, I would prefer to be on PD if I could. I have been doing relaxation hypnosis with the renal psychologist and I must say doing that and just talking to her is a great help. Is there anything in particular that is worrying you?
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I guess because this is new to me, it was just getting used to the new routine. All the bags, trying to remember to wash my hands, getting everything prepped. I got so used to being "normal." Now I just think I feel bad about the whole thing because I wonder if my bad habits had anything to do with the kidney failing.
Maybe I thought I was too normal and forgot I still had certain rules to live by. Like all of us.
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I felt the same on PD, was so sick of doing it, and hated having to scrub my hands 12 times a day, then add on the times after you go to the toilet, pat the dog etc. I ended up ditching the hand washing because my hands were getting irritated and just using aqium antibacterial hand rub. Of course I made sure I didnt have filthy hands to start with. When I was washing my hands I was going through 3 rolls of paper towel every week and was buying the recommended handwash which wasnt cheap either.
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PD might be a pain but think of the alternative. You could be on hemo. Ya might be heaving bags and washing ur hands alot but well...I Remember Hemo.
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I will take PD over hemo any ol' day, bring on them bags, bring on that cycler with the alarms in the middle of the night, just keep them damn needles away from me :)
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Lets see...number 17 to start, then 16, and finally they get to 15. Think knitting needle X2 in your arm.
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Ya, I really REALLY wish I could still be on CCPD every night and free every single day and never have any huge ass needles stuck into my arm several times every week...
and to think I hated the repetition and those huge 5L bags..
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Im really feeling like this right now, Im so sick of it all. Ive been asked if I want to go back in-centre for a while, its tempting, but I just dont know think its a good idea. It is good one way, but bad the other. :-\
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It is okay to be sick of it. I get sick of it, after almost eight years, I think it can get that way for me. Maybe a break in center would be good fior you. Maybe a change of scenery will help.
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I was trained to do home hemodialysis, given a machine by the dialysis unit, and even had the piping system in my home fixed for $3000 to make it dialysis-compatible. Then, at the last minute, I just couldn't bring myself to do it. Turning over a whole room of my house to that hideous machine, having to motivate myself every day to perform the treatments, having to keep records of all the supplies coming into the house, and then, on top of it all, still having to go to the hospital regularly for certain blood tests which could not be performed at home, seemed an intolerable invasion of my life. At least with in-center dialysis the nurses did the work for me; I didn't have to be psychologically involved with the whole business of my treatment, but could just let myself be treated by other people while I read and ignored the whole ugly business; and I could leave dialysis at the treatment center rather than letting it into my personal space. I know that most people view having their own machine at home to be liberating, but to me it seemed as if dialysis would own me, heart and soul, if I were taken over by home hemodialysis. I told the home hemodialysis trainiing team, "I feel like a condemned man being required to build his own scaffold."
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Well said Stauffenberg. My home turned into a hospital and I didn't like it.
But, what I wish is that if you did know someone in your neighborhood doing home hemo, like say I lived a block down from Epoman, that I could dialyze there and he would get paid for it by Medicare. Kind of little private dialysis centers. Why not the machine is just sitting there except for the few times a week that they use it. What a waste.
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I know how you feel about your room stauffenberg . When I was on CAPD all the supplies took up two rooms. In the end it is your choice, if you do not want to do home haemodialysis why should you :-\
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Despite how difficult it is, you wont get me back in-centre, you couldnt even drag me there. For a break is fine, which Ive done, but definitely not permanently. At home it is stressful, but I know that getting the best treatment possible, is my top priority, so I just have to keep going with it.
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Sounds like dialyzing at home or in center is another one of those personal choices. You guys are toughies. I don't think I would dare do the hemo at home! Of course, who would have thought I'd be doing the other thing at home by myself either! I guess we do what we do 'cuz we have to huh?!
But yes, our homes are our refuges. Hate having it turn into an aseptic-feeling place like the units or the hospital.
I just hope my CCPD tube lasts because I ran out of places for my shunts. Both arms blew two times each! Each one blew on both upper and lower arm. Crazy! And I don't want to get the tubes in my legs. Does anyone have them in their legs?
Well, I'm down to a new routine now and it's not as horrible as it was earlier. Guess I was just having a bad week.
Hope everyone out there is doing a little bit better also.
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I feel much better today. Had an hour talk with the renal psychologist about whats really bothering me and it really helped a lot.