I know some of you guys have been dialysing for a long time and “normal” can mean a lot of things but would like to know how long after dialysis does it take for you to feel “your best”?
I hate the feeling even after Nocturnal of feeling less than perky for a few hours. I know Pierre (if he was still around here) would tell me it is because I don’t do it every night and therefore ave more fluid to take off but was wondering whether those of you that do short daily feel ggod when you come off . I feel fuzzy in the head, it is like half my brain has taken leave for awhile some days. it makes me feel unmotivated and “lacklustre”. I hate that feeling ) :
(I know my dry weight is okay) Does anyone have similar sensations.
Hi
I’m on nxstage, I do four days a week down from 6 days. For me ,normal depends on a # of things. I like to have my machine set. So I set everything up the right before bed. And ready to go first thing in the am. If I get a good night sleep and get started in first hour after I get up, things seem to go great feeling wise.( I think it more in my head than anything , you know what I mean?) The tx is done and I can get on with my day. If I do my tx in am ,while I’m on I can talk to my wife and we can plan what needs to be done for the day, I have my coffee etc. If I have to stop in midday to do tx I have to stop everything I’m doing , then when done pick up where I left off. If I do tx right before bed , (plus if I had a really long day work wise) I have to clean things up and then hop in bed. I want to try noctunal if nxstage is permitted to go home. How do you work your noctunal, set up and clean up?
bobeleanor
Beachy, There was a truth in what Pierre said. When dad was doing 6 nights a week nocturnal he felt normal when he got off the machine. When we did 4 he wasn’t so quick at coming around. I read an article one time and it said nocturnal patients usually have the hangover about 10 minutes after coming off the machine daily patients about 3 hrs. in-center patient pretty much the day. I’d like to hear from other patient too as to how they feel when they come off.
Maybe I should clarify in the article I read there were referring to nocturnal as 6 nights a week and daily as 6x a week.
I’d like to see more answers to this question. Wonder how the daily NxStage users feel and the nocturnal NxStage Users.
Hi Folks
To answer you some your questions. I first started in center 3days a week. Felt great as far dialysis is concern. I then went to nxstage, started with 6days a week, still felt great. the hard part was doing it 6days a week during the day. It takes around 5 hrs from start to finish. 3 hrs run time, plus set up time and clean up. I don’t rush from the start to finish. The machine can be adjusted to make run time shorter or longer. I have never felt bad or sick or out of sorts. But I work hard on foods and fluids intake, and was a very active person before this happen (outdoors stuff). I will get back to being a active person once I get some other things taken care of here at the house. The only time I had a very bad time was at the start in the hospital. Once I went to center and home have felt great. I want to go either noctunal or down to 3 days(longer run time)
As far I know noctunal nxstage has not been open to the public home use across the country as of yet. I do hear that it is being tested in center and have seen on this page (I think) some long time dialysis folks have been asked to get it a try
bobeleanor
Beachy,
I have been on NxStage since March 06 and I feel pretty good now.
I do tx’s 6 days a week. I usually start around 8Pm and get done around 12AM. I feel pretty good all the time and after my tx I feel good.
For about a year and a half I felt much worse than I do now.
I was in clinical tx for my first year and felt horrible afterwards.
When I started NxStage I noticed immediately I felt better after my tx then any time I had a regular tx and evan the few months I used Aksys.
I think for me first was getting my red blood count up yo normal and 2 would be using NxStage 6 days a week.
I still think back how hard my first year was but now I feel good every day and I am able to do everything with my family I want to.
I still am not working but I spend time day trading, I do work around the house, cook every day and help coach my son’s football team.
I could definately not come close to all that my first year with clinic tx.
Keep you head up exercise if you can and always keep busy and you should start yo feel better. It won’t be like getting a transplant but you’ll feel well enough to do pretty much what you like.
Bruce Knet
Dialysis 1/05
NxStage 3/06 present
I have been on NxStage since March 06 and I feel pretty good now.
I do tx’s 6 days a week. I usually start around 8Pm and get done around 12AM. I feel pretty good all the time and after my tx I feel good.
For about a year and a half I felt much worse than I do now.
I was in clinical tx for my first year and felt horrible afterwards.
When I started NxStage I noticed immediately I felt better after my tx then any time I had a regular tx and evan the few months I used Aksys.
I think for me first was getting my red blood count up yo normal and 2 would be using NxStage 6 days a week.
I still think back how hard my first year was but now I feel good every day and I am able to do everything with my family I want to.
I still am not working but I spend time day trading, I do work around the house, cook every day and help coach my son’s football team.
I could definately not come close to all that my first year with clinic tx.
Keep you head up exercise if you can and always keep busy and you should start yo feel better. It won’t be like getting a transplant but you’ll feel well enough to do pretty much what you like.
Bruce Knet
Dialysis 1/05
NxStage 3/06 present
Thanks for your replies folks. Like the new name Marty (;
Unfortunately Nxstage and Akseys are not available in Oz and not likely to be probably in the near future as profit is obviously the bottom line for these companies and Australia isn’t a big enough market. So I can’t compare how I would feel on one of these machines.
I know i would probably feel more perky if I did daily Nocturnal but Freni is so dam noisy and sleep is so precious I can’t bring myself to do two consecutive nights. As I have never really dialysed “in centre” I guess i can only assume that I would be feeling worse so i better just “grin and bare it”
Cheers
Well, you know we patients on dialysis can’t have the level of energy and feeling like those who aren’t on dialysis but we can give an idea of how we feel between in-center 3x a week and daily-short 6x a week and must stress that our level of how good we feel just fluctuates over time. However, I must admit that I have felt way better doing daily-short than doing 3x a week in-center. The funny feeling after dialysis you mention is normal, its the whole process of your blood’s stress circulating through a machine and not our own natural body so of course we’re gonna feel a bit of the yucky down feeling, but its not that bad as compared to in-center where it was harsher and quite bad!..
Sheesh…“less than perky!”…is a bloody understatement. And there was me thinking the Samba girl was fullobeans all the time!!
I feel positively ‘ratshit’ when I come off in the mornings. Mind you, not as bad as post-5hour session while in training.
But over the past few months I’ve had 2 bouts of flu and been ‘short-changed’ by the young-intern-neph (if I’m lucky I get to see my ‘real’ one about every 5th visit) on my Epo - he couldn’t find reference in the rheims of my medical file to my having 100, so he 'scribed 80s…and down went the 'globin into the 90s. Anyway, I’ve been back on 100 for 4 weeks ('globin up to 103 last week) and now they have some 120 sitting in the clinic for me to collect. That should make me more ‘perky’ hopefully. I said to the pharmacist “Hey! I’ll be fit enough for athletics, but they won’t let me compete, will they?” “Oh no!” says he, deadly serious like…ha!
…I forgot to say, I’m a bit skeptical about the NxStagers 6nights, but less overall dx making them feel better.
I’m not sure 6nights of nocturnal would make me feel better. Wouldn’t I just get the r/s feeling every morning?
As it is, I feel pretty good on the non-post mornings & the rest of that day…
I use NxStage six days a week Nocturnaly. I go on at about 6am and I get off at about 2:30pm. I usually get right up to go to the bathroom, take meds, and do some clean up of my treatment stuff. I then spend some time on the internet. I used to eat, but lately I can not eat for several hours. If I do I have problems with my stomach. I don’t think that has anything to do with my dialysis though. I was on In-center and when I was done with my treatments there. I would get something to eat and go skateboarding. I felt run down a bit, sort of rung out like. I just try to push through it though. Lately my Iron sat is low and I have been resting for about ten minutes after my runs. I am tired all day though, I don’t think it has much to do with my tx. I really enjoy doing the NxStage six days a week for eight hour tx’s. I always had to use the largest filter in center and I still didn’t get enough dialysis. Now my numbers are coming into check, minus my iron sats. Personally a big part in how I feel when I get off the machine has to do with my mental attitude. I know that there is a physical aspect to it, but I don’t think it compares to the other physical pain I go through later in the day. So my opinion is really not a good measure of things.
LSB
[QUOTE=Bear;10908]Sheesh…“less than perky!”…is a bloody understatement. And there was me thinking the Samba girl was fullobeans all the time!!
[/QUOTE]
LOL Well the ole Bear is back! Yee haa! I have missed having you around. now if you can talk Amba into posting again the Aussies might just stand a chance!
Cheers
Samba girl
Patient we know on NxStage doing sdd 6x evenings says he feels much better coming off of txs than he did 3x in-center. Feels well instead of sick and can enjoy rest of evening at home, but doesn’t usually feel like going out til the next day. Seems like it would depend upon what time of the day/night one dialyzes and how often as to when one feels fully recovered. Also, seems like everyone is so different in how kidney disease/dialysis effects them.
Has anyone thought it would be a good idea to be able to try different dialyzing schedules to see which one is most beneficial to one’s energy and lifestyle? I mean most patients seem to be forced to dialyze the times their program permits. But if one could try out each dialyzing schedule one might find that a particular schedule best suits him. For ex., maybe every other night nocturnal will do the job and provide 2 full days of freeedom. Then again, maybe as compared with the benefits of 6x nocturnal it is not worth it to take those two days off. Or maybe 6x sdd works better for some as they have all their nights free to sleep unhindered and if they do their txs in the evenings, they have all their days free up until that point.
No matter how one approaches tx types it is a sacrifice in one way or another. But the point is discovering the schedule that best works for oneself.
I have tried lots of different times to dialyze. First thing in the morning, mid morning, mid afternoon, evening. I personally feel better on an evening schedule, sleeping when I get off, but I do sometimes switch to days so that I can make some evening dates. I had planned on alternating weeks, one week days, one week nights but unless I continue to feel better I will do only nights except when I have things to do in the evenings.
Cathy
home hemo 9/04
NxStage 3/06
Bear I don’t know what the explanation is and to me it doesn’t make sense why wouldn’t you feel icky 6 mornings if you were running 6x on nocturnal and you felt better on your days off. I can only tell you I have seen the difference. Like I told Beachy when we did 8hrs 6 nights dad was off the machine at 6 and in his shop by 8. Then we switched to every other night and he was off at the same time but couldn’t get the pep to go to his shop until around 11am. Then I switched to 5night 6hrs and his pep has improved again. I know my dad and he hasn’t demanded we only do every other night so got to believe he want’s the faster rebound time as compared to the extra nights off. I’ll have to see if I can find the article again and see what explanation it gives.
Marty, what 5 nights does he dialyze and if he does 6 hrs does that mean he comes off very early in the am? What made you decide to try 6 hrs?
I decided to go 5 nights because he just wasn’t as perky on the 4 nights or every other night schedule. It also gives dad better dialysis if we have a machine breakdown and have to take a day off. I do Sun, Mon, Tue then Thur, Fri. I went to 6hrs instead of 8 so I wouldn’t be using as much heparin. I turn the heparin off the last hr. so it’s 5 hrs. of heparin instead of 7 or 8. I take dad off anywhere around 4 am depends on when we get started. It doesn’t bother him as he usually sleeps through takeoff. I’m waiting to see how Pat makes out on nocturnal with the NxStage. If the results are good, I’m going to switch to NxStage. I figure the time I save on setting up and cleaning the machine after dialysis will give me more sleep time and free time.
Marty, what made you originally go from a 6x a week schedule down to a every other day- were you just trying it out to see what it would do? And why did you want your dad on less heparin? Hope you do get to try the NxStage if NxStage gives as good a tx as your conventional machine.
Hi Heather1
I’m new to nxstage( 4/03/06) to present, I can not speak for Country Girl, but for myself. When you are faced with new things or old sometimes it help to try and test the settings to see first hand what things will do.Always do this with someone who know what to do in case of a problem. I’m still testing flow rates , amounts, times and # of days etc. The whole thing behind home dialysis is the consumer has to find what works best for the person. This is why for me at least it very important to have trust in your doctor and he has the same trust in you.
[QUOTE=beachy;10864]I know some of you guys have been dialysing for a long time and “normal” can mean a lot of things but would like to know how long after dialysis does it take for you to feel “your best”?
I hate the feeling even after Nocturnal of feeling less than perky for a few hours. I know Pierre (if he was still around here) would tell me it is because I don’t do it every night and therefore ave more fluid to take off but was wondering whether those of you that do short daily feel ggod when you come off . I feel fuzzy in the head, it is like half my brain has taken leave for awhile some days. it makes me feel unmotivated and “lacklustre”. I hate that feeling ) :
(I know my dry weight is okay) Does anyone have similar sensations.[/QUOTE]
I usually go to bed but today I’m dialyzing from about 11:30 to 2:45 and tonight I am going to try to keep up with my buddy so I’ll let you know tomorrow.
Beachy do you have halloween Down Under? I feel like I should know the answer. Here in the States Halloween has become a big party night.