Nocturnal Dialysis in Australia

[Bruno]

I'm at home and dialysing 4 days a week and I know there must be a better way but there is very little information here in Oz. I've searched this site and round the world for advice on home nocturnal dialysis and found very little in practical terms.
Even this site sees very little custom and mixes nocturnal dialysis in a centre with nocturnal dialysis at home. Nxstage has a thread of its own whilst the Fresenius is rarely mentioned and that's the machine I have and all the information coming out of the USA pumps up the merits of nocturnal centres which all looks self serving to me..
Some machines appear to have a heparin infusion pump as part of their function (mine has) whilst others don't. I would have thought it to be an absolute necessity if you were going nocturnal.
Securing the needles worries me...Desert dancer says she uses an old sock and that sounds a good idea and I saw someone else mention that they use a lot of tape.
I also saw someone say you need a blood pressure monitor...not sure why.
I only discovered this week that you have to sleep on your back, which makes sense but that must make sleep difficult for some.
The Fresenius machine that I use will go for 5 hours on a bottle of dialysate, then you have to change over...is there a way around that?
The only problem I've ever struck on dialysis is blood clotting stopping the machine, I've fixed it by adjusting my heparin infusion but would it be a problem over the long night hours.
And do users sleep in single beds, or put another way can you nocturnal in a double bed with a partner?
I see so many different reports on frequency, I've become confused...what is an ideal nocturnal dialysis schedule...I won'y go two days without dialysis (that's silly in my view) but should it be successive nights with the occasional night off or what?
Speak to me, fellow night owls...please.   

[galvo]

Dunno Bruno, but I'm interested in the answers you're going to get.

[del]

Bruno, I don't know who told you you have to sleep on your back!!  Hubby has been doing nocturnal home hemo for over 4 years with a fresenius machine and he sleeps anyway he wants as long as he doesn't kink off the blood line.  We have learned with practice how to tape the lines so there is less chance of kinking.  As for a blood pressure monitor he takes his blood pressure before he hooks up and after the treatment is finished.  Hubby has slept in the bed with me every night he has been hooked up!!!  No need for a single bed.  Your heparin is set up a little differently - the amount that is infused each hour. As for taping - you do it in such a way that it is almost impossible for the needles to come out. Hubby also has a sensor that he wears on his arm - the same type that is used for children who wet the bed just in case the needles leak.  That thing is very sensitive.  he has to put gauze underneath it on his arm because sweat sets it off. 

Bruno if you have any questions or want any pictures of how we set up for nocturnAL send me a private message. We'll be willing to help any way we can!!

[Zach]

These sites may provide some good information for you Bruno:

Nocturnal Home Haemodialysis
Department of Renal Medicine, The Geelong Hospital, Australia
http://www.nocturnaldialysis.org/

Home Dialysis Central
http://www.homedialysis.org/

Cheers!
 

[greg10]

Thank you Zach for the links.  One uncomfortable truth that I find, as a newbie caretaker who has never done noctural dialysis, is that there is currently very little bio-feedback of the the patient's vitals to the present generation of dialysis machines.  You can still crash with all the fail safes and alarms, and without someone there to watch over the patient, there is a chance that the patient may not recover.  I think carson had reported that her blood pressure dropped dangerously low while on nocturnal.
http://ihatedialysis.com/forum/index.php?topic=20546.msg344193#msg344193

The present generation of machines are not capable of adjusting saline or ultrafiltration automatically to changing blood pressure, which in my opinion makes nocturnal dialysis, alone by the patient, a little more dangerous than it needs to be.  For example, what should a dialysis machine be programmed to do if intradialytic blood pressure drops below 75/55 or what should it do if intradialytic bp exceeds 180/110?

At the very least, I think an ambulatory blood pressure meter which can periodically monitor the patient and gives an alarm at preset levels should be used in a nocturnal setting.  In fact all dialysis patients should be monitored for their blood pressure in an ambulatory manner if possible.  Cost is really minimal with the new generation of meters costing perhaps $300 to $1000 considering that it may save a patient's life.

http://www.nocturnaldialysis.org/NHDsafety.htm

Fail-safes and alarms

Machines have a lot of fail-safes and alarm-systems. A machine will alarm to warn you and will switch off …

                    … if the ‘arterial’ pressure falls – 95% of all alarms occur when a blood line is kinked as you roll over on it during sleep and change the pressure in it

                    … if the ‘venous’ pressure rises – usually for the same reason

                    … if there is a blood leak – a rare event indeed

                    … if the conductivity (dialysate fluid ‘mix’) alters

                    … if the temperature drifts up or down

There are lots of safety nets built into machines. All you have to do is learn to recognize and correct them.  But, remember, you are taught how to do this … this is part of the training process … to know what to do if a problem arises and what to do to correct it.

So … will I be awoken, time and again?

No … the average number of alarms per night is 1.5/night

                    Think of an average 60+ year old man with normal kidneys and a 60+ year old prostate!  He gets up in the dark, finds the toilet, gets cold feet, bumps his shin on the furniture … and often has to do this several times a night! 
                    All an NHHD patient has to do is to shake the fistula arm, un-kink the line and go back to sleep, his feet never touching the cold floor!

If all else fails, you ‘come off’ and go back to sleep … there is always the next night!

… in addition, there are other devices to offer protection.

NHHD procedural/monitoring safety

Several features can help ensure your dialysis safety while you sleep. We either use or have considered using:

… an under-machine moisture-sensing device to detect moisture on the floor if the machine leaks any dialysate fluid. We use these

… an ‘electrode-impregnated tape’ which sits under catheter connectors (if catheter access is used) or around the AV fistula (especially the venous needle site) to detect any blood leakage  (See FAQ section)

… a clip-lock ‘connector box’ is used by some centres – these fit and clip over the catheter connection to prevent any unexpected disconnection.  Though these are available – or can be made simply by any instrument maker – though we have not routinely used these and all but one of our patients has a native AVF

Light-weight ‘back-slabs’ (like those that are used by some orthopaedic services to immobilize wrist injuries) can be used to stabilize and/or protect the AVF needles and their insertion sites. 

        Though potentially useful if the AVF is near the wrist or elbow, we have not routinely used back-slabs.

        Indeed, we encourage our patients to sleep normally, move normally during sleep, roll and turn as sleepers do. It isn’t natural to hold the arm stiff (or to protect it unduly) during sleep … so don’t. If your needling-stabilising tapes and techniques are correct, the needles will not be pulled out during sleep. Sleep is about relaxation so, you must learn to be confident (but never cocky) about your needling and securing methods … and relax.

Modem/internet technology can be used to feed machine data back to a centralized monitoring station.  We do not use this system in Australia though the original Canadian program in Toronto continues to do so

A bedside telephone with logged ‘help’ numbers in a one-key-speed-dial system is essential

NHHD back-up

        Back-up must be part of the support provided by your dialysis unit

        On-call, trained and experienced dialysis nursing staff must be at the end of the phone. This is, in our view, a non-negotiable ‘must’

        Technical staff must be available the next morning to fix machine/water problems

        Regular servicing is vital to keep your machine running smoothly

        All this must be ‘set-up’ for a program to run well and efficiently

[Desert Dancer]

Securing the needles worries me...Desert dancer says she uses an old sock and that sounds a good idea and I saw someone else mention that they use a lot of tape.

bruno, if you'd like me to send you pics or video of how I set up my needles with tape and a sock cuff, please PM me and I'd be more than happy to send them on. My needles don't budge one iota, and I know there have been nights I tossed and turned like mad.
 

I also saw someone say you need a blood pressure monitor...not sure why.

Nope. As a matter of fact, my blood pressure monitor attached to the machine has been disabled because I despise it. I have a stand-alone BP monitor and I only take my BP at the beginning and the end of treatments.

I only discovered this week that you have to sleep on your back, which makes sense but that must make sleep difficult for some.

What??!!?? Absolutely untrue. Good lord, that would have been a dealbreaker for me had it been true. No, I sleep every which way - mostly on my sides but even on my stomach now that the catheter is out. Nice and comfy I get, too.

The Fresenius machine that I use will go for 5 hours on a bottle of dialysate, then you have to change over...is there a way around that?

Don't you have a Baby K (2008K@Home)? If so, this isn't true, either. Andy and I generally set up the machine around 7:30 - 8:00 at night just to have it ready ahead of time and allow for any issues, but we don't usually cannulate/go to bed till around 9:30. This means the machine is paused/idling (but still using the acid and bicarb) for about two hours before we actually start using it, for a total of 10 hours or more - and I still have some left in the morning.

The only problem I've ever struck on dialysis is blood clotting stopping the machine, I've fixed it by adjusting my heparin infusion but would it be a problem over the long night hours.

No, because the machine will automatically infuse heparin every hour, at whatever rate your doctor has prescribed. I start off with an initial bolus of 2 ml of heparin and the infusion pump dispenses 1 ml per hour, starting at the top of the second hour, for a total of 7 ml through the treatment (9 ml if you count the initial dose).

And do users sleep in single beds, or put another way can you nocturnal in a double bed with a partner?

Of course you can. I know many people won't - or can't - because of concerns for their partner, and that's understandable. For Andy, though, he was adamant that we were NOT going to start sleeping in separate beds. Snuggling up is the best part of the day! It took us about a week, week-and-a-half to get used to the noises, but now we both sleep just as well on dialysis nights as non-dialysis nights. As a matter of fact, Andy noted one night a few weeks ago that now it was too quiet to sleep on the off-nights! We have a bed set up in the spare bedroom just in case, but he's never had to use it.

I see so many different reports on frequency, I've become confused...what is an ideal nocturnal dialysis schedule...I won't go two days without dialysis (that's silly in my view) but should it be successive nights with the occasional night off or what? Speak to me, fellow night owls...please.

I think this is one of those things that is highly individualized and takes a lot of factors into account. In some parts of the world you can get daily nocturnal; here in the US they offered me every other day and I jumped at it. Like you, I didn't want the two-day gap of a weekend, and one day on/one day off just seemed like a good and balanced schedule to me. Even on a three-day week I'm still getting double the amount of dialysis as I would in-center, and almost three times as much as in-center on a four-day week. So far it seems to be working just as hoped, but I chalk that up more to the DURATION of dialysis (8 hours per treatment) rather than the FREQUENCY. It's probably a bit of both.

The only drawback I've found with nocturnal is the occasional bout of insomnia; you can't sleep, but neither can you get out of bed. I just make sure my water jug, book/book light and crochet supplies are within arm's reach, and that solves that problem.

[Bruno]

Dear Folk
Thank you for your advice, it contained all the little details I wanted. You have been so helpful and introduced enough information for me to realise I need to go back to my centre and get a bit more training. I've already run a 7 hour session during the day so I'm aware of the different UF goals and slower UF rates you are able to achieve, in fact since I've been looking after my own dialysis I've never had a blood pressure issue so I wondered why it might be necessary.
I wasn't sure about the needles because I often got an alarm when I moved my arm and I couldn't see how I might stop it happening at night unless I lay very still. So I guess the solution must be to tape it up extra tight.
The only thing you don't mention is your blood pump speed, I plan to run on 300 but I wondered whether the additional hours made a slower speed necessary.
I know about the insomnia...I still get it with day dialysis so day or night, I don't care...it's just another thing to deal with.
As I get closer, I take you up on your offers of personal help for which I thank you deeply.

[del]

Bruno, hubby runs for 7 hours and has been told not to go higher than 250 pump speed. Dialysis flow is 300. He usually processes 102 liters of blood each night.     

[RichardMEL]

Yes Bruno I quite agree that there is very little here (oz) about Nocturnal. It seems John Agar at Geelong (a regional city to the south of Melbourne, where I am for those that don't know) is the only one actively doing this which seems strange to me since it seems like an ideal option for many patients who work - and sadly many younger people are having to go onto dialysis for various reasons.

I had heard rumour that a change of guard at my hospital meant that they were going to seriously consider instituting nocturnal in our unit (the main beef seeming to me, of course, staffing requirements and the old bugbear of money). I was really looking forward to that as an option (while I was on dialysis) as that might have really made a big difference.

I agree definitely more should be done in this country to promote nocturnal dialysis - both at home and in centre for those that home isn't an option (like me)

[Bruno]

I had some good advice from one of my support nurses...she suggested I switch from AM to PM dialysis as a preliminary to nocturnal and I've just had my first try. Went on at 4pm and came off at 11pm which was a bit of a ball breaker. So much so that I've decided to trial at 6 hours which will give me 24 hours per week. It was a bit hard on No. 1 who likes to be in bed by 9.30 at the latest and the siamese cat could not understand why I was in bed early and not his Mum. Kept coming in and looking at me with a puzzled look (for a cat) and going out again.
Apart from being screamingly bored, everything went smoothly until I got an arterial pressure alarm I couldn't get rid of. Finally I gave myself a saline shot and cleared the lines and this fixed it temporarily. I had to lie still for the rest of the session. Looking it up afterwards I think I had 2 problems, firstly I taped myself up too tightly because I was too anxious to make sure the needles couldn't move and, secondly, I think the arterial needle was pressing against the wall and interrupting the free flow of blood. The increased blood in the transducer was the clincher.
My question is: who do you tell beforehand the arterial cannulation is faulty? Or do you only find out during dialysis and make a cannula adjustment to fix it?

[mogee]

Bruno, sometimes you  can tell if a needle is badly placed when it is first inserted by the way it feels when you flush it with a saline syringe.  I've had more than my fair share of cannulation problems, and I can say there are no easy fixes in most cases.  Sometimes I even remove the needle and use another buttonhole while my machine idles in recirculation.  The best solution to cannulation problems is to know your access and take care of it.

I combat boredom by drinking and smoking pot while I'm hooked up.  I have agreed with my nephrologist that I should avoid getting so stoned that I'd have difficulty dealing with an unexpected crisis.  Also, I believe sex can be great while on dialysis, but so far I've been unable to convince my medical team to supply me with a partner.  http://ihatedialysis.com/forum/Smileys/classic/bandance.gif 

[Bruno]

Not sure how to take you,mogee, if you were an Aussie I would know you were having me on but since you aren't I give what you suggest a try. I'll have to ask my doctor about medical pot (I'm not optimistic) but I'll certainly give the grog ago and I'll ask SWMBO whether I can get a sex partner during dialysis although I know what she'll say.
What is the name of your neph? He/she sounds far more enlightened than mine.

[mogee]

I'm kidding about the sex, but I do drink alcohol and smoke weed while on dialysis.  Lately I've been taking medication for my ADD, and it has the strange effect of lengthening my bleed time when I drink alcohol.  My bleed time went from 6-8 minutes up to 70 minutes.  I'm now being weaned off the drug (Stratterra), and until I'm no longer on it I will avoid alcohol while I dialyse.

I always tell my nurses and physicians if I'm using recreational drugs since it can be medically relevant.  My nephrologist is not particularly liberal, but after six years he understands me well and tolerates my quirks.

[Bruno]

Well, another progress report. Solved the pressure alarm problems, turned out it wasn't an excessive HB which we've been tackling by boosting the heparin dose...it was an intermittent fault in the heparin infusion function. Turned out the machine sometimes forgot to give the dose each hour (as it is supposed to) and consequently my blood clotted and stopped the machine. Bummer, but you live and learn.
Well, here's another problem for your attention...no matter how well I fix the needles, I still get the occasional alarm when I move my arm. What I am trying to do is move from my bed to a chair alongside, but it sometimes happens when I move my arm in bed.
What am I doing wrong? 

[del]

Bruno you are probably going to get those alarms when you move much . Hubby gets it when he moves from sitting on the bed to lying down.  He just resets the alarm and everything is fine.  A few times he has had to go to the washroom when he has been hooked up. (there is enough hose and cord on the machine that he can get to the washroom) and he will get alarms when he is moving. Just push reset again and it is fine. Sometimes in the night if he happens to kink the blood line or lie on it he will gt an alarm.  He just fixes things and resets the alarm.  Has nothing to do with the way the needles are positioned for him.

[Bruno]

Thank you, Del, you're a gem (like DD). I've been experimenting with 'butterfly' and 'chevron' tie on the needles and I was beginning to think it might be them.

[del]

Bruno would you like for me to email you some pictures of how we tape the needles and how hubby tapes the blood lines after he is hooked up?  PM me your email addy if you want me to. 

[Bruno]

Yes please Del, I couldn't find your email address but I know mine is listed on my profile. I had my first 6 hour session without a single alarm yesterday. I put it down to the new method I tried using a gauze pad under the needle to raise it slightly...I think I have been taping it down too tightly and too flat and that makes me worry about a tourniquet effect on my fistula. I have also been concentrating on getting it laying in the right direction and less tightly and it might be my imagination but it was less painful during dialysis. I even got out of the bed and stood up and then sat down on my chair without raising the alarm for the first time.
That's good, no? My fistula is on my wrist and I wondered if that didn't make it more difficult...you tend to flex it more than say the upper arm? I also like the schedule you are on...5 or 6 days a week will suit me better than day on/day off.
I've found a place in Sydney that will train me because I have now discovered, with your help and that of DD, that there is a bit more to it than just going on. Blood tests, different settings for your machine to say nothing of convincing Fresenius and the powers that be that I'm going to need even more supplies.
I see my neph next Tuesday to put my case to them.
Wish me luck and God bless you for your help to an Aussie gent even though I am down in the dumps because we just got our ass kicked at cricket by the bloody poms.
God, I hope you're not English.
er...if you are, congratulations and well played.
Roll on the footie season.

[del]

I will get the pictures to you in the next few days , Bruno.I'll take some pcs when we hook up tonight. Hubby's fistula is on his wrist as well.

[Desert Dancer]

Bruno, my offer of pics or video stands as well. The next time I go on is Sunday night, so PM me your email address and I'll get them out to you. Like you and Del, my fistula is also on my wrist and I haven't had an alarm in weeks.