Can’t you breathe freedom? Don’t you feel more complete, like a true person? Isn’t it humane, the right thing to do? I mean c’mon, of course its more than just putting those needles in ya’ … 
Just catching up on this interesting post! Beth! Really, what else does one do in bed? To be blunt, cuddles,sex, rolling over whenever without restrictions, no washing machine sounds and did I mention sex! :lol: Now i am no nymphomaniac but i am sure all my fellow Nocturnals would agree, spontanaiety becomes a big issue and I sure don’t feel like getting intimate just before or after Nocturnal! (just being honest here)
As for the 6x weekly nocturnal vs 3x, alternate or 4x Nocturnal. I have just come back from the Neph and labs are getting even better. I have just been doing alternate nights lately, now have to add phosphate (on 0.4), Potassium normal.So can eat and drink what I like still, on Alternate Nocturnal. As Amba said, little variation (so far) between post and pre results. However, I know I feel fantastic on the off days and just okay for about 6-8 hours after coming off Nocturnal.
Quote Pierre (It’s not hard to dialyze 6 nights per week. You just get in a groove and do it. I mean, why do we complain about this setup business so much? Nurses and techs do that multiple times each work day, for pay. We, on the other hand, are doing it for ourselves, for our own health. In the philosophy of Zen, little things of daily life are enlightening experiences. “When you’re hungry, eat. When you’re tired, sleep”. I say, when you setup your dialysis treatment, just do it and make it akin to a Zen experience. Concentrate on what you are doing and do it joyfully. If you’re not a Zen monk (and I sure am not), you can still make it a joyful experience in your daily routine, just like an avid gardener derives pleasure from daily weeding )
Pierre, I am all for joyful Zen experiences and will keep this in mind tonight when I hook up. But for now, I will continue to treasure those nights off with a passion.
Cheers
I suspect part of the reason you guys on alternate nights nocturnal feel better on off days than after a treatment is because of the roller coaster effect. You are still taking a lot of stuff off on those treatment nights (some of it not measured in bloodwork), and so you feel worse after a treatment. When you do it 6 nights a week, you’re more even. I saw what a big difference it makes when I went from 6 to 5 nights. For me, even the restless legs came back. My exercise endurance went down in an obvious way. I decided an extra night off just wasn’t worth it.
I have zero impairement to getting intimate right after coming off my treatment. And I have no impairment to cuddling, etc. during treatment either. I really don’t restrict my movements much during the night. Almost not at all, really. The only thing I don’t do is to roll over on my stomach on one side, but it’s only because where my arm ends up would make it vulnerable to my wife accidentally getting caught up in my bloodlines. But when I come off in the morning, I don’t feel like I’ve been on dialysis at all.
We’re all different, of course, but for me, daily is definitely the way to go.
Pierre
All this under the heading of Cheese, Jane! :lol:
Pierre, I guess you are right as usual. Although I only take off an average of 2.6litres on alternate, maybe it is other toxins that aren’t measured. Of course my creatinine and urea are very high pre, and never make normaal range. For me , it is also the head space thing. Particularly before as I am thinking about Freni, when I come off I am thinking about FOOD and a cuppa. Have to work on being more ZEN! 8)
LOL, the most important thing in my universe when I’ve come off in the morning is getting that fresh cup of coffee ready! And it’s not just any coffee either. It has evolved into a double espresso. Nothing less will be good enough.
I think there’s a kind of psychological barrier we have to overcome, as in, “What! I could never do this every night for 8 hours”. I went through that myself. But it’s precisely doing it like that which solves the problem, because you end up actually sleeping the whole 7-8 hours, and you feel pretty good afterwards.
Don’t take my word for it, though 
Pierre
Lots of cheese and double espressos and we can survive however many txs. per week… 
I dont feel bad after every treatment. It usually depends on how much fluid Ive taken off, and how well Ive slept. If I get a decent sleep, and dont take off too much fluid, Im not too bad.
I am quite confused at the moment though. I ended up in emergency yesterday with a high potassium :shock:
All I can seem to relate it too is that I had a night off treatment over the weekend, then did a 7.5 hour run after the night off, which I cut short because there was a storm and I just wanted to get off the machine.
Then I went in centre lastnight and did 8 hours and I went flat at the end of treatment. I dont know whats wrong :?
A few days ago I thought my scales were playing up and things just didnt add up, so I bought new scales. Now lastnight, I triple checked my calculations and everything was right. So counting the saline I had, as well as a cup of tea, I would of thought my weight would be more than what it is. Im so confused.
That’s puzzling. Potassium normalizes pretty quickly after starting a hemo treatment - certainly after only 2 hours, but even after one hour of treatment. Just curious… What made you suspect your potassium was high?
What was your UF rate the night you went flat? If you’re taking a lot off and your UF rate is higher than 400, you can get low blood pressure if at the same time, you are in a period of real weight gain. That happened to me once.
Pierre
Perhaps diet and concentrate? 2K ? 3K?
I was already at the hospital getting medications (thank god), and I was having lunch when I started to feel quite weak in my arms and legs. Its a sign of high potassium, which I have had before. I had that usual first though of “I’ll be right”, but when I stood up I almost fell over. So I didnt muck around, I went straight to emergency, told them my diagnosis, and I went straight in.
I am sooo glad I did, otherwise I might not be here :oops:
My UF was 400ml/hr which is what I usually average at home. It was just weird, as I went flat pretty quick. I sat up after I awoke, started setting up my gauze, and I just felt so sick and I could feel the colour draining out of my quite quickly :shock:
I had a gain of 2.4, plus I had a 500ml thermos of tea, then add 300ml for washback, which makes 3.2 litres. When I got home I was 300ml over my dry weight and my BP was 99/64. I am on a K1 with 22ml of potassium added to 10 litres (2 bottles of dialysate). Im not sure what K that makes it, I cant remember. Ill find out if I think of it. I think its 1.5.
I dont see how I could of put on weight as I am trying to lose weight!! I have been eating quite sensibly, and I try to walk at least once a week if I can, but doesnt always happen.
I have had low BP before, and I had to put my dry weight up a couple of kilos. After a couple of weeks it came back up, and I have been gradually reducing the weight by 200ml each treatment. I have been pretty much stuck on 92kg, and BP has been normal to on the high side of normal.
The other day my weight was 91.3kg post Dx. My BP was ok. Thats when I bought the new scales. Bought $50 scales this time so I hope they are alright.
I am seeing the specialist next week, so I will be definitely bringing this up.
Just been speaking to the unit and Im going to put my weight up 0.5kg, and go to a K 1.25.
Hmmm, well I’m going up to a K of 2. Lucy rang me after seeing my blood results this a.m. Just after having boxes’n’boxes of A412 delivered (Thurs) I now have to swap to 2886, so will have to drive up there tomorrow & collect some, along with a replacement moisture alarm, as I tested my big one (that goes under the dialyser) and now I can’t get it to stop squealing, unless I disconnect the battery (I have).
Hope it all settles down for you soon, Amber! Scary little episode for you.
Whats your pre and post K bear? If you dont mind me asking that is.
Ive just remembered Im all out of bleach, so Im going to have to go back up too. Wish I could drive!
Bear wrote:
along with a replacement moisture alarm, as I tested my big one (that goes under the dialyser) and now I can’t get it to stop squealing, unless I disconnect the battery
Bear, what exactly is a moisture alarm, is this something on the machine?
Hi RichStacy
Bear may well use the same sort I use in Aussie Land. They are bed wetting alarms. Little pad attached by long wire to battery powered alarm. Just tape pad under arm near cannulas. Very simple, cheap and effective as they detect ANY moisture. Mine come from New Zealand. 8)
Beachy, we use that alarm plus one that you put under the dialyser.
Hi y’all,
amba_79 wrote:
I was already at the hospital getting medications (thank god), and I was having lunch when I started to feel quite weak in my arms and legs. Its a sign of high potassium, which I have had before.
Muscle weakness can also be a sign of low potassium. Was yours tested at that time?
Yeh, they took it after they did an ecg which showed that it was high. They have some gadget in the ER that gives you a reading pretty quickly.
beachy wrote:
Hi RichStacy
Bear may well use the same sort I use in Aussie Land. They are bed wetting alarms. Little pad attached by long wire to battery powered alarm. Just tape pad under arm near cannulas. Very simple, cheap and effective as they detect ANY moisture. Mine come from New Zealand.
Beachy apparently I overlooked this response and am just now finding it. Is this something that has to be ordered or is it something that can be purchased at a local pharmacy?
The needle leak alarm we use here is just a simple bedwetting detector called the DRI Sleeper. You can see one here:
http://www.amgmedical.com/site/cate.asp
Just recently, all patients here have been switched to new ones which are identical, but which are labelled as “HEMOdialert” (a label which the company just sticks over the existing packaging). These are identical to the previously-used ones, except they have been calibrated by the manufacturer to respond better to blood as opposed to urine. The viscosity is different.
Pierre