do anyone dialyze at on the nights the monitoring system is not on
Hi Terry,
Can I guess that you do nocturnal home hemo with Fresenius, maybe? I believe that they monitor either 3 nights a week (so everyone needs to do the same nights) or every other night, so you’d have a rotating pattern of Mon-Weds-Fri-Sun-Tues-Thurs-Sat… A little more background would be helpful.
What has your clinic said about dialyzing on non-monitored nights? I suspect that the clinic and your doctor would feel more comfortable if you stuck to the nights that are monitored (they may even require this), but many programs don’t have monitoring because they’ve found that it isn’t really needed.
Do you have home monitoring systems, such as a bedwetting alarm to detect blood leaks?
I dialyze overnight 6 nights per week without any remote monitoring at all.
Pierre
We are monitored but once in a while the system goes down. In this case a person remains on call and they call some patients and ask them to quit the treatment and others such as us… they just let us know the system is down and we can continue with treatment. It depends on how confident the center is with our capabilities.
i am with fresenius and i do have a bed wetting device and also a blood leak detector under my dialyzer. just wanted to know how people was doing 6 nights a week without being monitored. thanks for the reply
I do 6 times a week and am never monitored, I also am a self dialyzer, ie no helper. I do not do nocturnal although I could if I wanted to. In almost a year on dialysis I have pulled a needle once while I was playing with it (pressure was high) and had a very minor leak at the connection to the dialyzer where I had screwed it on partially crooked (lost maybe two tablespoons of blood in two hours - before I noticed and corrected). I don’t remember ever having to shorten a treatment or get off early due to any problems.
Cathy
Self home hemo 9/04
PKD
I’m not usually alone at home during the night, but occasionally I am. I don’t have a trained or interested helper though, so it’s pretty much the same as being alone.
An obvious difference between short daily and nocturnal is that with the latter, you are expected to sleep through the treatment. So, you yourself aren’t even monitoring it when you’re sleeping. Therefore, it requires a big leap of faith so to speak. When you first start nocturnal, you don’t know if you will wake up to alarms, and you haven’t yet developed trust in the whole thing. The 3 nights at the hospital help, but it still takes another couple of weeks after that, at home, to really start feeling confident about. By confident, I mean reasonably confident. You can always think about scary scenarios if you want to.
Once you are confident that you do wake to alarms, and you have done several treatments, you develop that confidence which allows you to function. That machine is running very slowly (300/300, with a UF rate in the neighbourhood of 300 to 500) and not much can happen that can’t be dealt with. On the rare occasions when I’m awakened by an alarm which has stopped the blood pump, before I reset it, I simply check the time on the display to make sure it hasn’t been stopped too long. I periodically rehearse in my head what I would do for various situations, so that I don’t have to waste too much time thinking about it when I’m half asleep. If the blood pump had been stopped for too long, I would simply take myself off without rinsing back.
The single biggest fear is of course a needle pulling out while you’re fast asleep. Let’s face it. It’s not impossible. But those needles are each taped down with a large Tegaderm and they are actually pretty secure. My needle and bloodlines are further taped down at my wrist, and as an added precaution, I tape down the ends of the tape with an extra bit of plastic tape. It would take a heck of a pull to yank one out. It doesn’t even come off that easily when I’m taking the needles out in the morning. Those suckers are well-stuck on there! To further ensure good adhesion of the Tegaderm, I was instructed to wash my arm with soap just before putting myself on, while the machine is recirculating, and I do this religiously before every treatment.
When I start a treatment, I monitor it closely for the first half-hour. I make sure pressures and TMP have stabilized, I re-tighten the two transducer filters, I check the display and the idiot lights to make sure everything is running properly, and that heparin is being administered as programmed. I also make sure there are no leaks in the blood circuit or in the dialysate lines, and I double-check to be sure I haven’t missed anything or say, reversed the dialysate connections. And finally, I adjust the air chambers so the levels are on the high side (this is what I was taught to do). It’s remarkable how those levels are in exactly the same place by morning. They usually haven’t budged a bit. If I happen to have an alarm or be awake any time during the night, I do a quick visual check of everything once again. I keep a little flashlight nearby for that, so I don’t have to turn the bright lights on.
After a couple of weeks on daily nocturnal, my blood pressure started to completely normalize - and I’m talking a sitting BP of 120/65 even at the end of the day after drinking more than 3 litres! This from a guy who for the past decade and a half lived from one hypertensive emergency to the next. At first, after that, I worried that my BP might further drop during the 7 or 8 hour treatment while I’m sleeping. So, I checked every now and then when I happened to be awakened. Remarkably, it doesn’t drop at all. It just stays more or less the same during the whole treatment.
I’ve never been a detail kind of guy, but for this, I’m extremely methodical and careful. I’m not sure what remote monitoring would really add to all this. Ninety-nine percent of the things that could happen aren’t serious. For the more serious events that could potentially happen, there’s not much remote monitoring could do for you anyway. Program after program have demonstrated that these things don’t happen. For example, a person on dialysis at a centre or during short daily has a much greater chance of having a heart attack or something than someone asleep on nocturnal. On nocturnal, blood is being removed and returned relatively slowly, and the rate of fluid removal isn’t that much greater than what normal kidneys do. It’s a lot easier on the heart.
We all worry a little sometimes, I think. I do, anyway. But then I look at things realistically, I consider the advantages of being on nocturnal hemo, and that puts things in perspective.
Pierre
An article reported results of one-month’s study of remote monitoring on 48 Fresenius patients doing hemodialysis 6-8 hours every other night with an average blood flow rate of 250-400 mL/min and an average dialysate flow rate of 500 mL/min. Two certified patient care techncians in Indianapolis, IN monitored the 48 patients and recorded what kind of alarms occurred. In one month, only 76 alarms were recorded on those 48 patients:
Systolic BP - 24 (31.6%)
Diastolic BP - 24 (31.6%)
Venous pressure - 8 (10.5%)
Pulse - 4 (5.3%)
Arterial pressure- 4 (5.3%)
Blood pump - 2 (2.6%)
Conductivity - 2 (2.6%)
Ultrafiltration rate - 2 (2.6%)
Ultrafiltration goal - 2 (2.6%)
Blood flow rate - 2 (2.6%)
Transmembrane pressure - 1 (1.3%)
Air detector - 1 (1.3%)
Total alarms - 76
This brief snapshot showed that only 13% of the 571 treatments on 48 patients over the one-month period had an alarm. The study authors recommend monitoring nocturnal patients who dialyze while sleeping with little or no supervision. Fresenius sells a home monitoring system called iCare that can be used by any clinic using Fresenius machines.
Reference:
Diaz-Buxo JA, Schhaeper C, VanValkenburgh D. Evolution of home hemodialysis monitoring systems. Hemodialysis Int 7(4):353-355, 2003