How long on the machine?

[katieking1981]

I'm just wondering how long others are dialyzing at home. Ive been the care partner for my boyfriend since April of last year. John's nephrologist just increased his treatment another 15 minutes. This is the 2nd increase he has had since starting home-hemo.

We 're up to 3 hours a treatment now,  5 days a week. It's disappointing as we were originally told treatments would be between 2 and 2 1/2 hours. We both work full time and have 2 kids. If he didn't feel do much better on HH,  he'd go back in center.

Is anyone else spending 15 hours a week on the NxtStage?

[cattlekid]

Yup. I go anywhere from 2 hrs, 45 minutes to almost three hours. It sucks because I started at 2 hours 15 minutes. I work full time too and between dialysis and work, everything else is falling by the wayside.

[lmunchkin]

John does 3:15 to 3:30 a session.  I work full time/he doesnt.  He is 3 on/2off.  He started out 6 days a week, but decreased with time.

How long has he been dialysising?  You can actually do fine with less, but it will catch up with him in the long run.  I think first and foremost, John has changed his intake.  That has helped tremendously.  He will consume a little more solids, but less liquids.  Of course, the solids will eventually turn to liquid, but that takes time.  Its what he drinks that makes it hard.  So he doesn't drink anymore.  He sips!
He has dropped sodium pretty much all together.  It made him too thirsty. He uses pepper more than salt. Instead of guzzling, he sips!

Kate, make this work around your schedules.  It is much better at home, I know you know that, but you just have to make adjustments.  Sure, nobody likes sitting for that long with needles in them.  I get that, but if he wants to live like this, he will have to do what he needs to do.

This is not easy to watch or do from any option given, but for them to continue living, it is what they have to do!  We just have to be there to help & support.  We can only do the best we can do.  Not much more to say to that.  We got to quit the stressing over it.   I found the more I stressed about it, the worse it got!  Make it a fun for them and please, get some me time!  You will drive yourself nuts, if you don't.  Ask your husband to try to cut back on his intake.  Its not what he is eating, its how much he eats & drinks!  Just ask him to cut it back a little, and it will get better for him.

Also, I take off what needs to be taken off in the first 2.5 hrs. then the rest is taking off toxins.  When we first started, he was meeting his goal and shortly, I would take him off.  But over time, it showed.  He was somewhat tired & slow to do anything.  Well, we found out, that taking him off right when he meets his goal, that his toxins had built up.  He wasn't thinking straight.  It really wasnt because of him, it was because "I" didn't want him on any longer than he needed to be. I didnt want to see him sit there.  I was wrong.  I understand now, that in order for him to be better, he would have to be on longer.  Im glad we made those changes, but you are right though.  This disease is All consuming, but you have to have some ME time Kate.  And realize that there are somethings that are just beyond our control.  Give it to God & let him have it. Do what you can, and that is all anyone can expect.

If you miss a day of D for one reason or other, its not the end of the world!  Just do it the next day! Eventually, it will become routine and it will just be a thing that is done with in your routine.  It keeps him alive.  Just enjoy the time together!
Main thing, DON'T STRESS ABOUT IT!  I did & it made me sick.  It got me nowhere!

Relax, adjust & make it work for you!!  You are still new to this, just stick with it Kate!

God Bless & keep you in his care,
lmunchkin

[lmunchkin]

Yup. I go anywhere from 2 hrs, 45 minutes to almost three hours. It sucks because I started at 2 hours 15 minutes. I work full time too and between dialysis and work, everything else is falling by the wayside.

Oh boy, do I know what you mean.  But I have found that now there are fewer alarms, I make sure he is taped down good, and I can do some things around the house.  I do not necessarily need to be right there under his nose.  Just look in on him every now and then. Im getting braver about leaving him and doing things while he D's.  If something happens, then at least you are there to help.  Its not like you are leaviing the home while he/she is on D.  You just have to handle each situation as they come along!

Yea, some things have to fall by the wayside.  And if it has to wait to be done, so what?  I know your situation is far different from mine & Kates, Cattlekid.  You are Ding without much help from hubby.  That is sad to me, but you are determined enough to make it work for you.  I admire all who do it themselves.  Its hard enough with help, but doing it on your own is something so remarkable!  I know I have said that I Admire those who do this alone, and was told "Not", but I think you are all to be commended.  This is not easy!

God Bless,
lmunchkin

[Dannyboy]

3 to 3.2 hours, 5 times a week.


We, too heard the "2 to 2.5 hours" mentioned when deciding to switch from in center...

[boswife]

Something with 'nxStage' that the dialysis educator (not our trainers, but the 'educator at nxStage) told me when we were wanting to go 'longer' was, first, that they never heard of someone wanting to go longer lol, but that NxStage is "dose" based not time based.  that the dose your given, is driven by all the factors such as what blood flow your running at, and how fast you want to take of fluids etc.  What we did, because we wanted to protect heart/fistula as much as possible, is slow things down... We went from there bfr of 450, down to 300.  Yes, thats more time, but its the same "dose".  Wen in center, it's very different,,when they add time, it's also more dialysate so im questioning just adding "time"... What did they do to add that time?  Add more dialysate? Slow down BFR???  Just curious

[cattlekid]

For me, to add time, they added diasylate.  I went from 20 liters with a Flow Fraction of 33 to 25 liters with a Flow Fraction of 35.  The most diasylate that I can whip through is 9.4 liters per hour.  So even when I have no fluid to take off, I am still stuck with 2 hours and 45 minutes. 

It aggravates me because the only reason they added the diasylate is so that I could make their artificial Kt/V goal.   Don't bother looking at my other labs or take into consideration my other goals in life, just add on the machine time so that you look good.  Ugh.   

[big777bill]

 I do 3.5 hours 5 days a week. We run at 500 bfr with a filtration factor of 30. It gets tiring but I feel much better than when I went to dialysis clinic.

[boswife]

I see, and i agree cattlekid..  How you feel is a whole lot more important than those particular  stinken numbers.  For one, Bos ktv numbers are great (biig whoop) but they would be better if he wernt also leaking protein into his urine.  they are always fussing about his albumin (so am i though) but wont do 24hr urine test to see if thats 'part' of why.  What they worry about is that KTv

[cassandra]

I do 30 liters, 5 days 2,5 hours. Pump speed starting 280, last hour 270. All smoothly so far.

Take care Cas

[boswife]

btw... bo does 18 liters, 5 1/2 days, (3 on one off) 3 1/2- 3:45 hrs,  bfr 300, 32 flow fract .  takes off 1-2 liters first day back on, and usually 1 or under on remaining 2 days.  This is so long as he is good.  Keeps him from cramping when he's 'good' so he's keeping his own self in line..  feels a whole lot better   Funny thing, he just took off 2 days and came in with only needing to take off 1.8.  It not being so hot out helps the thurst..