I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Adam_W on February 04, 2009, 06:26:12 PM
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Has anyone on long term home dialysis (PD or HHD) ever had to deal with "burnout", where you just get tired of the same routine over and over again? I've been doing home hemo for almost two years now, and have been dealing with some burnout off and on for the last month or so. I'm not necessarily burnt out on physically being responsible and performing my own treatment, but simply staring at the same four walls with no one to talk to. My nurses and I have been trying to figure out ways for me to try to combat this problem, and we decided to try having me come into the home unit and dialyze there for a week. Not a permanent arrangement (I'll never return permanently to in-centre if I can avoid it), but just for a little change in scenery and someone to actually talk to while I'm on the machine. I dialyzed there today, and it wasn't too bad. I even helped out a patient who was doing some re training, and a couple new nurses who were leaning how to use the NxStage machine. Anyone else have any experience dealing with this?
Adam
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I've been dialyzing at home since 2001, alone since 2002; I definitely have periods when the burnout is worse. For me travel seems to help. In 2007 it was getting real bad. I considered going incenter for a break then I gave nocturnal a try and found it made dialysis seem like a different animal - less of a burden, less of a grind.
I can't think about doing this for the decades I actually want to keep doing it, I just have to go one day at a time.
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I would think going back in-center for a few days would do it!!! You will be in a room full of people and STILL no one talks to you. FREAKS!
:waving;
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I think I get more social connection when I'm home - I'm allowed to use my cell phone at home, but not in-center, so most of my friends and family call when I'm on dialysis, because they know I will have time to talk then. Most of my burned-out feelings have coincided with times I've had to be back in-center for a week because my partner was going to be out of town. Having to drive all that way, put up with the more stringent fluid restrictions, and the crappy, washed out feeling I get after in-center dialysis cures the burn-out in a hurry.
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When I was doing manual I did it in front of the tv, so no problem with burnout. Then I switched to the cycler and since I was sound asleep while it was dialyzing me, no burnout. Guess I'm not sure what you mean.
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I used to have visitors come over when I was on home hemo. Play scrabble with me or watch TV, mostly catch up chatter, eat. I started it to help my husband feel less stuck in the house with me (I did 5 hour sessions) alone, if someone was there he could at least run errands or go outside (no cell phones then). However it ended up being terrific for me too and we even used to have regular dinner parties on D.
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I hope the burnout phase passes fast for you Adam.
Going incenter for a week or so sounds like a decent try at getting out of your restlessness/burnout feeeling.
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Sorry to hear you are feeling burnt out Adam. I am waiting to do home haemo and I am going to kit the dialysis room out with every kind of home entertainment system I can get my hands on and I'm hoping this will give me enough distractions to avoid burn out. Hope youfeel better about it soon.
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It's probably not the same as talking to people in person, but do you have a laptop? I connect with a lot of people online and can use my lap top when doing my PD exchanges. Of course it only takes about 30 minutes so it's not the same thing as 3 hours! Maybe chat or even a webcame would help? I'm a computer junkie so if I have one in front of me I can stay entertained for hours.
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My husband Marvin is like Monrein -- he makes his home hemo time pass by having visitors, watching tv, playing on his laptop, watching DVDs, and the like. When he's running, he's on "phone detail" and has to answer it every time it rings (I hate talking on the phone). And, our phone rings, rings, rings, and when our friends and family call and Marvin tells them he's on the "machine," they just talk and talk. He also has lots of friends/family visit during his time on the machine, and that helps.
When Marvin was in-center, he would sleep through most of the treatment every time (though he did put his ear phones on and watch that little tv). Home hemo has cut down on Marvin's "nap time," but he's okay with that.
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Yeah- "burnout" hjappens. It can also be a sign of depression. Look at that,a nd maybe talk to a psychiatrist.
Other than that , I would enourage you to check ou nocturnal.
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My problem is that I usually don't have anyone to talk to while I'm on the machine. I do use my computer and sometimes watch TV, and usually that's enough to keep me occupied. Since I've done a couple treatments in the centre to have a bit of a change of pace, I feel much better about the whole thing. As for nocturnal, I'd love to do it, but Duh-Vita won't let me do it on the NxStage. I want home nocturnal so bad I've thought about buying a used syringe pump on ebay to use as a heparin pump and do it anyway >:D (Well, not really).
Adam