Questions about Home Nocturnal Hemo

[RenalSurvivorDotCA]

I haven't started training on this yet as they don't have the space yet for another trainee. I'm sure these questions will be answered at the training but I'm impatient.   

The plan is I will dialyse  7-8 hours x 6 days a week. So, I work daily at 7:30am - about 5:30pm, sometimes more. So, treatment lengths are at my discretion? I figure if I went to bed (and hooked up) for 11:00 and read for a bit and then went to sleep I could dialyse for  about 7 hours and then get ready for work. Is there much cleanup/sterilization to be done to the machine after dialysing? Would I have to get up earlier in the day to make time for cleanup and getting ready for work? Could I leave it and clean it up after work later in the day? If i was on a day off, could I dialyse my 7-8 hours during the day and have the night free?

ETA: I'm prone to cramping at the unit, but I'm pretty sure it is because of the high rate of fluid removal. Any of you experience cramping at night while on nocturnal? With the fluid removal rates so low (because of the long session) it would seem cramping would be minimal.

[carson]

From my experience I find that I usually need about an hour to get going in the morning.
When you come off you'll be totally stripped of all nutrients and fluids. Because it's slow filtering you should not cramp as you won't take off as much daily as you would going to the centres a few times/week.
You will need to eat something nourishing and drink first thing! My clinic has me disinfect the machine after each use, usually taking 30 minutes. Twice a week I do another special "hot" disinfection as well, and that takes another 50 minutes, so you're looking at 1.5 hours.
I found working at 8 am kinda hard if I went to bed at 11 pm the night before. Usually 10 pm worked better and I could read a bit if I felt like it.
My machine takes 30-45 minutes to set up and do all it's checks and balances before I can hook up.
It's a lot of work but well worth it!! Eventually you may end up like me and not be able to sleep unless the machine is running. The off nights are hell as I can't sleep at all!!

[mogee]

The length and frequency of your treatments will be determined by your nephrologist and dialysis team.  I only experience cramps in very unusual circumstances, such as after a 50km bicycle ride.  Sometimes cramping can be avoided by taking 300mg of quinine before bed.  My setup and disinfection routine is the same as Carson's.  I also sleep best while dialyzing and have insomnia on my nights off.  I urge everyone to use home nocturnal hemo, I'm convinced it is as good as a transplant.

[Dan.Larrabee]

Let everyone know what machine you will be using. Carson uses a different machine than I do and my experience is a little different. I use NxStage 6 days a week with 7 ½ treatments.

My set up time is 20 minutes. My clean up time is less than 5. I clean my machine once a week and it only takes me 5 minutes. I get supplies once a month and it takes 20 minutes to move it to my storage area.  I can set up, clean up and do a treatment whenever I want, including during the day. Its so easy, my 14 year old does it for me sometimes. 

Noctournal is better in that you can remove UF slower and I never cramp unless I take too much off. My recovery time is usually only 10 minutes and I dont have to drink right away.

[del]

With our machine(hubby does nocturnal) we have to put vinegar through the machine in the morning -takes about 10 minutes -we take the needles out while this is being done. When the needles are out it is usually time for the machine to go in heat disinfect.  When the heat is finished the dialysis machine shuts off automatically.  The RO can be turned off before that - when the temp in the dialysis machine gets over 60 (takes maybe 10 minutes).  Machine can be stripped then or left until later. You do need to eat a good breakfast though.  By the time the needles are removed and the bleeding stopped the machine is all done for the morning as well.  We disinfect with bleach once a week.  We use a fresenius machine.

[Burton]

After reading all the messages on the message board, I wonder if anyone who is experienced in using the "Homechoice" overnight machine can  answer some of my questions ?
Do they take a lot of setting up ?  Do they take a lot of cleaning ? Is it noisy ? How long does the training take ?  I live in the UK, any idea of the time it takes from the doctor saying you can have one to the time you get one.
I've been on CAPD with Baxter bags for 2 years and 3 months and I'm looking foreward to not having to dialyse every 4 hours.

[Jie]

I thought this is for HD.

For PD, "Do they take a lot of setting up ?" No, the setup is pretty simple. The most time consuming is to warm up the solution by the cycler, which may take up to 20 minutes. There are additional few minutes for priming by the cycler. So, it may take about 30-35 minutes before connecting oneself.

"Do they take a lot of cleaning ?" No, cleaning of the space and cycler is about 1 minute.
 
"Is it noisy ?" Yes, there is some noise, but it primarily white noise, so it is not a big deal.

"How long does the training take ?" One day should be enough for patients who have used manual exchanges.

[Bruno]

I'm looking at nocturnal but I'm not sure I could do it and looking at these posts doesn't help...the first post says 6 nights per week, some of the others seem to have nights off (every second night)...6 nights a week would be at least 42 hours of dialysis which seems an incredible jump from the 3 x 5 hour weekly sessions common in most centres.
And how do you sleep? Do you have to lie on your back all night? What stops you pulling out the needles in your sleep?
And if you are dialysing nearly every night you can't have much fluid to pull off?
I don't mean to be a pain, I'm just curious.

[Desert Dancer]

Hi, Bruno -

I've been doing nocturnal hemo for just one week now (four treatments so far). I dialyze for 8 hours every other night, which gives me 24 hours of dialysis one week and 32 hours the next. Even that IS an incredible leap from the 3x4 in-center treatments, and that's exactly the point. The longer, slower and gentler, the better. I must admit I have blinders on when it comes to nocturnal hemo; the fantastic outcomes of this modality outweigh every other consideration to the point that they aren't considerations at all.

So far I've been able to sleep just like I always do (positionally, anyway - actual sleep just started last night). I can toss and turn to my heart's content. What I do is cut the feet off old socks, and use the remaining cuff of the sock to cover the whole shebang after taping the needles securely. (If you can't quite picture this I'd be happy to post or PM a picture the next time I go on.) The cuff is tight enough to keep everything from moving in the least, but not so tight as to damage the fistula. It feels very, very secure and I don't have any fears at all about the needles coming out. I also use scissor clamps to attach the lines to the edge of the bed.

You're so right about the fluid! When I did in-center they had my dry weight set at 68.5 and I could never take off more than 1500L in a four-hour session. While in training I did short daily (2.5 hours x five days) and still could not take off more than 1500L. The high ultrafiltration rate (600) just wreaked havoc on my body. Now with nocturnal, I can take off 2600L and possibly more, because the ultrafiltration rate over an eight-hour span is only 320 - almost half what it was with other modalities.  In just one week I've taken off enough fluid to adjust my dry weight down to 63.0, and last night I only had to take off 1000L so I can pretty much drink whatever I want.

[Bruno]

Thanks DD, That was a big help.

[del]

Bruno, my husband has been doing nocturnal for a little over 4 years now.  He does 7 hours a night 5 nights a week. He breaks it up so that he does 3 nights, has a night off , 2 nights and a night off.  because you are on your own schedule you can sometimes do 2 nights on a night off and 2 nights on.  He has also done just one night sometimes and then have a night off.  He really likes the nocturnal because it fres up all his days!!  The longer slow treatments really helps to remove a lot more potassium and phosphorus. He usually has to eat more foods high in phos and potassium to keep his levels up.

[mogee]

Bruno, I've been on home hemo for six years.  I dialyse 5 days/week for nine hours.  I always sleep on my back because I have sleep apnea and use CPAP, a machine that supplies pressurized air into my airway via a mask over my nose.  To ensure that the catheters remain in place I use a product called IV3000 and two kinds of tape.  The catheters are so secure that I don't worry about disconnecting accidentally.

The difference between 45 hours/week of D and 12 hours/week of D is astounding.  I have no dietary or food restrictions.  I take no medications at all.  I'm probably healthier today than when I began dialysis six years ago.  Everyone who can get home hemo should take the opportunity.