I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Working while on Dialysis => Topic started by: lou on November 17, 2009, 08:40:58 AM
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Well I'm back again after a long old rant yesterday. What I didn't mention yesterday was that I was finding out more results today. One of my friends dad was tested a few weeks ago and I didnt mention it to anyone ( I guess I was scared of jinxing something) and have been here so many times before with raised hopes. Well results came back today and he is not a good match, so the list is my only option now. I do realise that I'm so lucky that these people have all been tested, but also feel completely gutted none of them were a match.
I really feel like I'm starting to fall apart. I cant stop bursting into tears and it's really scaring me cos I know I'm usually such a positive person.
Anyway am hoping to get some opinions here on work. I am a teacher and teach 4 days a week. My day off is on a tuesday and I usually do my planning/marking on this day (well in theory!). I just feel knackered at the moment and maybe just emotionally drained. I started dialysis 3 weeks ago and am doing pd 3 nights a week, although I saw the nurse this morning and she told me I need to up it to 6 nights a week starting next week. I would love to cut back a day at work and just do 3 days but I'm not sure if we can afford it and also I dont know if that's just me being lazy??
I mean I'm tired but isnt everyone and I guess I could carry on doing 4 days a week. Am so unmotivated with my job at the moment and I suppose thats just the frame of mind I'm in at the moment. I haven't mentioned this to my boyfriend yet, think I will mention it tonight and see what he says. Again not sure if we could afford it (he is a self employed builder so work can be good or bad).
Do other people on dialsysis work full time? esp pd? Would love to know what some of you think.
If you think I need to just pull myself togther and get on with it - please say so!!
Thanks to anyone who reads this and replies
Louise x x x
EDITED:Moved to working on dialysis section- kitkatz-Moderator
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I know of some people that work full time, but I am not one of them. I am not on PD, I do in center, and I still work 2 days a week. I am an extrended FMLA (I am blessed with a very understanding employer who is protecting not only my job, but my benefits as well). I really can't imagine working more than the hours I do now, I am usually worn out after treatments and would not want to do my work afterwards (I am a Social Worker). I really comend those that do continue to work full time, it's got to be a lot to do some days!
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My husband still works full time. He does home hemo and hasn't missed a day because of kidney failure, other than when he had his fistula surgery. I'm sure he wanted to stay home, but he's one of those guys who just gets up and goes to work. Since he started dialysis, he is feeling better so it's easier for him to work. He chose home daily hemo so he could still work. I don't know about PD, my husband has never done it.
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I work full time plus overtime and im on PD.
You have no energy and no motivation i suggest you look at your hemoglobin lvls. I was the exact same tired and lacked drive. My hemoglobin was at 10.4 for a man it should be at 12-14. I started getting arsnep (same as epo shots) and my energy lvl went up and i feel almost myself again.
Why are you only doing PD 3x a week? You should do it nightly and rid yourself of toxins daily. I have never heard of anyone doing PD only 3X a week.
So my advice is (keep a record of your labs) i get new ones every month and i keep a copy. I know when things start feeling wacky what to look for (thx to this site) and no one can help you like you can help yourself. So check your hemoglobin numbers this can make a person drag and feel tired all the time.
Good Luck
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Don't beat your self up Lou. You've just gone through an enormously stressful time coming to grips with having to start dialysis, and your body will be responding to this. I'm amazed and impressed that you are working full time through all this. I would ask if you could cut back to the three days in class until Christmas while your body adjusts. And definitely get onto more dialysis - it will help. I've never heard of the 3 days thing either - or even of 6 days for that matter, although over here they do encourage us to take a 'day off' once a month. Interesting concept and way harder to do than you'd think. As for the falling apart - that is natural after such disappointing news!! It's a grief. If you feel like it goes on too long and your getting bothered by it don't be afraid to look up a counselor. Thinking of you.
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Thanks. I'm only doing 3 days a week for the first month. I think it's because I got a bit emotional at my training and they said I could do this for the first month to help me get used to it. My levels were not too bad at that point but now I need to up it. The nurse wants me to do 7 days a week but I asked if I could do 6 because am not sleeping well with the machine (I know i'll get used to it) but I just really really wanted one 'noraml' nights sleep. She said if it's poss I can do 6 nights.
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...I really feel like I'm starting to fall apart. I cant stop bursting into tears and it's really scaring me cos I know I'm usually such a positive person. ...
...I just feel knackered at the moment and maybe just emotionally drained. ...
Louise x x x
If I'm not mistaken depression is one of the symptoms of renal failure. Certainly feeling tired is. Your nurse is telling you to do 7 days a week because you may need it to feel better. The longer you wait the worse you'll get. You may even need to do a daytime exchange, I did when I was on PD. Try and find out what your labs are so you know how you're doing. You won't feel well if you're underdialyzed.
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I worked 30 hours a week when PD was going good
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I still work full time at a huge hospital and push a 350# machine. I am exhausted at the end of the day, but I refuse to give in to my illness right now, plus I'm not willing to give up 1/2 my income.
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I have been working full time teaching special education and have been on dialysis for 11 years. It can be done.
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I am another PDer working for full time. My cycler has traveled with me for close 30,000 miles this year. Besides my job, I walk (fast walk, 4 miles/hour) for 3 to 5 miles a day. As Paul said, check your red blood cell level to see whether Procrit is needed to increase your energy. The normal level Paul gave out is more for a woman. The ideal level of hemoglobin is between 11-12 when using Procrit. When you do 7 days of PD a week, you can eat a lot more of protein, which will help energy level too. You don't need to do a perfect job, just doing a reasonable job is good enough. A reasonable boss should understand.
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Thanks for all the comments I think its shown me I really need to get a grip and pull myself together! I'll wail till I'm doing more dialysis and see how I feel then. Sounds like its more to do with my frame of mind at the moment so I think I need to sort that out and get a bit more positive again! Cheers Lou x x x
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I worked a full time job Mon-Fri from 8-5 while on PD.
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My husband Otto has worked full time since starting. Otto did in-center first and then went to home-hemo and it made a HUGE difference. Otto at times I think would like to just bury his head, but with 3 kids he just makes himself get up and be "normal".
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I'm three weeks into PD and didn't feel the best to begin with but all of a sudden, I feel more like my old self again. I do work full time but before I started PD, I worked 8:30 - 6:30ish. Now, I have to leave work at 4:00 - 4:30 so I can get home to do a manual exchange around 5:00. I also used to only sleep 6 - 7 hours a night but I'm hooked up to my cycler for 8 hours a night and I think that's helping me feel better too; I'm getting more sleep!
Oh, and you do get used to sleeping with the cycler. While my sleep isn't totally uninterrupted, I find I can go right back to sleep if I have to get up to solve an alarm.
Good luck!
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Thanks for all the comments I think its shown me I really need to get a grip and pull myself together! I'll wail till I'm doing more dialysis and see how I feel then. Sounds like its more to do with my frame of mind at the moment so I think I need to sort that out and get a bit more positive again! Cheers Lou x x x
You can try to 'will' yourself to feel more positive but I think it will be easier once you are properly dialyzed and your labwork is better.
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Hi Lou ... my Blokey is working full time (currently on hemo 3x weekly) but he does get very tired. Remember though that everybody is different and you work in an incredibly stressful position (I know, I work in UK education! Are you primary or secondary?) which involves lots of work 'out of hours'. It is a job you can't help but take home with you. Just because some people can work full-time doesn't mean that everybody can; we all have different factors to take into consideration for our work.
Also, if you stick with the four days you need to try and wangle Wednesday's off next academic year ... because it's the middle of the week it's psychologically perfect (but that's just me saying that because I relish the fact that I never have to work more than two days in a row.) ;D
Hope you're still feeling positive and looking on the brightside!
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I do PD on a cycler machine 7 days a week, also do a mid day exchange (manual) every day. Plus I work for the govt. full time and take a night class.
I need to start exercising so I can get some energy. I do need to cut back....whew. Thankfully that night class ends in about 2 weeks.