Does anyone not work and do nxstage?

[poohkari]

Wade does a 6 day on, 1 day off cycle, and his usual run time is about 4 hours. Not including set up and breakdown. Because hes still managed to be a big bruiser, its going to take him that long - he runs at 500.

He is on disability currently, and doesnt feel up for getting a job. Of course i'm not going to pressure him into anything he can't do, but I was curious to see what your personal situations were.

[KR Cincy]

I'm on the 6 on/1 off schedule, I run about 3 hours around 440 and it takes about 25 minutes for set-up and I'm working full-time. It's a scheduling dilemma sometimes, but we work it out. Usually it's work, home for dinner with the family, then on the machine by 7'ish so we're in bed by 11. We use the time I'm on the machine for family stuff...homework, reading, and hopefully, some Wheel of Fortune (great way for 8 year olds to learn words/spelling/etc.)

The great thing about the NxStage is you can preset the machine in the morning while having breakfast, then shut it off and turn it back on when you get home and save that 18 minute alarm test cycle. And both my wife and I can do all the preset stuff, so whoever has the time, gets it done.

They did offer me full disability when I they took my kidneys, but I'm only (ha! only!) 46 and wasn't ready for that. Good luck with your decision...it's not easy.

[Russ]

I run 6 days a week, 3.25 hours, 550-600.  I am currently on disability.  When I was in-center for 1 1/2 years, 3 days per week, I felt awful after dialysis and went right home to bed.  Working was out of the question.  Even though I was a programmer and sat at the computer all day, going into the office was not feasible.  Now that I use NxStage, I feel much better but I am still unable to work.  I am having trouble with low hemoglobin which keeps my energy low but I'm working on getting my levels back up.  If I could work, I certainly would.  It's tough going from a programmer analyst's salary and being the primary bread winner to disability.  My goal is to lose enough weight to qualify for a transplant and return to work and take the burden off my wife.  I really admire dialysis patients who are still able to work but some of us are just not able.

[skyedogrocks]

Rob does a 5 day schedule, 3 -3 1/2 hours (depending on his fluid) at 430 speed.  He works full time as an electrician.  He knows he is lucky that he doesn't feel like crap after dialysis, many people do.  Since going on NxStage, his BP is so much better and he has a faster recovery after his dialysis.  He feels he has to work to keep his sanity in check.  If he didn't he feels he would go into a depression being home all day (I have a feeling he would too).  I support whatever he does.  He was wishy washy at first about NxStage, felt it ruled his life.  However, we have a routine now and home hemo has really made him feel so much better.  It turned his life around.

Since I work from home, I am able to set up his machine for him so that by the time he is finished with dinner, he can hop on and spend time with our family.  He will help our son with homework or play video games with him.  Our son, who is 8, is used to him being on dialysis, even knows his schedule by now. 

Once Wade feels better, I would encourage him to perhaps work part-time at first.  It might make him feel a heck of a lot better.

[KR Cincy]

I was only in-center for about 6 weeks, but that experience tells me I probably wouldn't have been able to work fulltime if I stayed. I felt lousy after each treatment (granted, I was still healing from two major surgeries, so that slowed me down) and the scheduling would have been beyond tricky. NxStage and my home hemo team have been great getting us in and out of training as quickly as possible...we have amazing support from both companies...we've had minimal problems with the equipment...supplies are no problem...and I do feel tons better after a NxStage treatment than I think I ever would feel after an in-center round.

I struggled with low red blood count, anemia, and blood pressure issues, but with the cooperation of my neph and my home trainer, we got all that stuff sorted out.

I do think starting back to work parttime is a great idea if you can do it. I did, and it allowed me to pace myself, build up my stamina, and not have to deal with any setbacks. None of this is easy...but it's possible.

[jbeany]

I'm on 3 on, 1 off.  I work 2 days a week.  I've tried for more, but I can't handle it - I end up over tired.  When I get too tired, my gastroparesis kicks in, and the puking starts up again.  Still, it's a big improvement for me to be working at all.  I spent most of the last 6 years too sick to do much of anything, and even a short grocery shopping trip left me unable to get out of bed the next day.  I had far too many days when the only thing I accomplished all day was the trip from the bed to the bathroom to throw up again. 

To be competely honest, I could work more days if I pushed myself, but I'm enjoying having the energy to have a clean house and to work out on a regular basis.  If I worked more, the house would be a pit again, and the work-outs would stop from lack of energy.  I figure the health benefits from the weight I'm losing with regular workouts, and the peace of mind I get from having a (mostly!) clean house outweighs the money I would get from an extra day of work each week.  I also have more energy for things I enjoy, such as my crafts, which make me money as well.

[Aldente]

When I first went on dialysis I opted for PD and maintained a 40 hour work week.  After seven months of PD I had other medical problems which put me on in-center hemodialysis.  My schedule was Tuesday, Thursday and Saturday and I went in for dialysis from 6:00 a.m. to 10:00 a.m. and then went to work.  I actually spent 36 hours at work and made up the other four hours working at home.  Going to work after dialysis was not always the best experience.  My manager and co-workers were very supportive but I felt that I was not carrying my load.  Other medical problems sent me back to the hospital and I went on short term disability.  As the months passed by I knew that my position at work was filled by someone else so I had no guarantees as to what I would be doing when I returned.  After six months, short term disability turned to long term disability and I filed for Social Security disability.

Now that I am on NxStage I considered going back to work and coming off disability.  If I worked an eight hour day with a one hour lunch and then added at least one hour for travel that would be a ten hour work day.  Add to that an hour for setup and tear down and four hours for treatment and you end up with fifteen hours devoted to work and dialysis.  Some might say that your time on dialysis is rest time, but I still like/need my eight hours sleep.  That leaves one hour for getting out of bed and getting ready for work, eating breakfast, and eating your evening meal.  Any glitches in the schedule like a difficult dialysis session, and the whole thing falls apart.  It's just like working two jobs.  Also, by the time you make it to the weekend you feel like a zombie.

I'm over 60 and that kind of schedule would be too much for me so I opted to stay on disability.  My wife and I had to make some lifestyle adjustments  to make ends meet but they ended up being relatively minor.  For others, not working may not be a viable option.  There certainly is no one-size-fits-all solution to the work/no work dilemma.  On the lighter side, I must admit that my honey-do list has grown and I sometimes wish that I could go back to work so I could relax.

Good luck in your decision.

[cev]

Richard is retired, lucky dog, I work 10-11 hrs day - but am lucky only 10 mins to work --- he starts the machine and when I get home it is wash hands start setup once he is running he might nap but mainly watches TV.  I make him a light snack, then I mostly cleanhouse, sometimes I just kickback or sometimes I talk to you.  we have dinner after he is off the machine.  There is not much time for a problem stick and I am so glad we still use the bags and do not have to deal with pureflow issues.  When his Hgb is up he runs errands and goes visiting with his friends so he is out of the house most days for at least a few hours.  When his Hgb is low it is a nightmare, he feels awful sits around the house and whines and feels more awful (this is our biggest challenge other than the lack of sleep)  our day starts at ~ 4:15am and ends between 9:30 & 10:00pm

speaking of Hgb -- where is your Neph keeping yours?  I have to battle to keep Richard's around 12 that is about the lowest level and he can still function close to normal   I am reading that medicare and drug companies want patients just above the transfusion level - I find that crazy and really poor patient care  any thoughts on Hgb?

[paris]

My neph explained that the epo can increase chance of clotting.  When I first started getting the shots 3 years ago, the magic number was 13.2; below that they gave me a shot.  Now, it is has to be 11 before I get the shot.  Now I have one every 2 weeks and the number is always between 11 AND 12.   I felt so much better when I was at 13, but then again, 11 is better than 8!  I have also read several articles stating the same reason for decreasing the acceptable level.

My reply had nothing to do with Nxstage--sorry!  I will say you husband is very lucky to have you help him with all of this!