I will have to chage my signature - extended treatments on the NxStage

Bill,

Be careful with the electric blanket – your body is a great ground while dialysing and electric blankets or sheets can have significant leakage. I discovered this a few years ago when I would get small shocks when I touched Jane while dialysising with an electric mattress cover. After looking into it I decided it wasn’t safe without an isolation device which you could find out about by talking to a hospital safety engineer.

Jane was always chilled at startup on NxStage. The problem has been largely solved by heating the saline bag in a microwave and keeping the heater control on the warmer at MAX at startip – I turn it down to 1:00 o’clock after 15 minutes or so. But it’s the big blast of 70 degree saline that was the major problem. Test the saline against your wrist when it comes out of the microwave to be sure it’s not too hot – just like you would a baby bottle!

Mel

[QUOTE=HemoHelper;15353]Jane
No one have come up with any answers yet… Have tried what they sugested … Like reducing the dry weight… Increasing the amount of dialysate from 20 ltrs/tx to 30 ltrs/tx also tried increasing he time from 7 hr to 8hr, even tried to increase the FF to 30 from 24.

HemoHelper[/QUOTE]

I well understand- either the dialysis expertise is not there or there are no further ways to balance/optimize the tx. I think it’s the former. I find it interesting that engineers can design a machine, but it takes someone with a strong knowledge of dialysis to get the best tx for the patient. Not many dialysis nurses or nephs I’ve met possess this knowledge.

Jane

Since everyone is different it is next to impossible to come up with a parameter that fits all the same. So it is up to the individual to find the best TX for themselves and use whatever information that their team will aprove of. Thru sites like this I have found different possibilites that might make a difference in my partners outcome. But Before I actually try I let them (my team) know what I’ve discovered and get their blessing before trying it. This has worked for us and usually have not encountered any resistance to the suggestions.

HemoHelper

[QUOTE=HemoHelper;15358]Jane

Since everyone is different it is next to impossible to come up with a parameter that fits all the same. So it is up to the individual to find the best TX for themselves and use whatever information that their team will aprove of. Thru sites like this I have found different possibilites that might make a difference in my partners outcome. But Before I actually try I let them (my team) know what I’ve discovered and get their blessing before trying it. This has worked for us and usually have not encountered any resistance to the suggestions.

HemoHelper[/QUOTE]

That’s what I’m saying- same here. I usually find the info. and bring it to them rather than the other way around. I have encountered some true dialysis experts, online, who really know dialysis, but the majority of nephs and staff I’ve had only go so far. I would not even be in a home program if I had not brought all the info to my neph and asked him to PLEASE start a program.

I don’t know what others experience, but I’ve been in 1/2 dozen units and have not had a neph yet that is what I’d call progressive. Same thing with the dialysis nurses. The nurses are trained briefly by the company and IMO their education and training doesn’t begin to go far enough. I’ve had many 20-30 yr nurses who are not up on their dialysis knowledge- they’re just doing the same things as they first learned them, over and over again.

So, the way I see it, being pro-active and constantly scratching for info. is the way to go. Now, with home programs opening up, it’s like the home patients are beginning to know more than their teams in certain respects, through everyday experience of working with the machine and figuring things out through trial and error.

Medicare literature speaks of a “team effort”, but many clinics ignore that. When one becomes a home patient, the patient graduates to a new level in more ways than one. It would be nice if the expertise was there, but it often is not. So, as a home patient one is more free than ever to find the expertise wherever it can be found.

Cross posted from billpeckham.com

I’ve just completed my first overnight dialysis while on vacation. It went well but I didn’t sleep as well in the bed as I do in my chair at home. My habit is to set my iPod to random play through my laptop - I think I heard more songs last night than I do at home but still I heard only a few songs that make up the 6 hours of music.

I kept feeling like I wanted to roll onto my left side (my access is in my right forearm); at home, in the chair I’m happy to stay on my back. I could switch beds - the room has two single beds - so that the cycler is on my left and try sleeping on my side. I might try something different tonight. In theory I could sleep in a bed at home. When I was in a nocturnal study using the Aksys I put a single bed in my room at home but right now the chair is stacking up well.

One thing is settled - I like having the extended option on vacation. My Mom and I ate a late dinner last night, well late for us we got back to the condo about 9. I leisurely set up the machine, getting on after the weather report (rain expected) at quarter past 11. If I had been dialyzing “short” I would have wanted to be on by 7PM, which would mean I would have needed to set up the machine earlier in the day. Dialyzing 3 - 3.5 hours in the evening makes dialysis more central to the day. I have to plan around it. With over night dialysis I didn’t give it a thought until after dinner.

Another plus for extended is how I felt. One of my complaints previously was that I didn’t feel as well dialyzed as I thought I should when I was dialyzing in the evening. I think I should be able to take two days off without feeling unwell, like I must have dialysis. Before this trip I dialyzed three nights in a row prior to my red eye Saturday and felt great all day yesterday. I never felt unwell, in need of dialysis. I take this as a sign that the extended treatments are working for me, noticeably better than the evening regime. I’m sold on overnight dialysis.

Bill,
I am glad to hear that you are sold on nocturnal txs. Everytime I hear a report like yours of someone who has gone on to do nocturnal, it gives me hope that I can experience another level of improvement when I get the opportunity to do extended txs. It is interesting that you say by getting several nocturnal txs in in a row, it allows you to be able to feel like you can take 2 days off.

Since I started SDD txs, my output dramatically decreased and whereas I feel very well on each day I have a tx, on the day following the day off, until I get my tx that evening, I feel less than good that whole day. Eventhough I keep my fluid down over that period, I have that edemic feeling around my eyes and all through out my body. I don’t know if this is due to fluid build up mainly or insufficient dialysis. But I dread my day off as it’s not really a day off if I am going to feel unwell. Did you experience this when you did SDD?

I dialyze in the evenings as it is the only way that seems to work well with me as far as getting the most out of my day. I feel well the whole day, but as soon as I eat supper, I begin to feel unwell again, so by dialyzing soon after, the discomfort only lasts a short time, I do the tx and feel well again and can enjoy the rest of my evening. I know I will not know how nocturnal txs affect me until I get to experience it. I’m waiting for my clinic to give me a date for training.

[QUOTE=Bill Peckham;15485]Cross posted from billpeckham.com

I’ve just completed my first overnight dialysis while on vacation. It went well but I didn’t sleep as well in the bed as I do in my chair at home. My habit is to set my iPod to random play through my laptop - I think I heard more songs last night than I do at home but still I heard only a few songs that make up the 6 hours of music.

I kept feeling like I wanted to roll onto my left side (my access is in my right forearm); at home, in the chair I’m happy to stay on my back. I could switch beds - the room has two single beds - so that the cycler is on my left and try sleeping on my side. I might try something different tonight. In theory I could sleep in a bed at home. When I was in a nocturnal study using the Aksys I put a single bed in my room at home but right now the chair is stacking up well.

One thing is settled - I like having the extended option on vacation. My Mom and I ate a late dinner last night, well late for us we got back to the condo about 9. I leisurely set up the machine, getting on after the weather report (rain expected) at quarter past 11. If I had been dialyzing “short” I would have wanted to be on by 7PM, which would mean I would have needed to set up the machine earlier in the day. Dialyzing 3 - 3.5 hours in the evening makes dialysis more central to the day. I have to plan around it. With over night dialysis I didn’t give it a thought until after dinner.

Another plus for extended is how I felt. One of my complaints previously was that I didn’t feel as well dialyzed as I thought I should when I was dialyzing in the evening. I think I should be able to take two days off without feeling unwell, like I must have dialysis. Before this trip I dialyzed three nights in a row prior to my red eye Saturday and felt great all day yesterday. I never felt unwell, in need of dialysis. I take this as a sign that the extended treatments are working for me, noticeably better than the evening regime. I’m sold on overnight dialysis.[/QUOTE]

Excellent Bill! Music is great isn’t it?

Why can’t you roll onto your left side? There is no way I can sleep on my back all night. I rotate onto my side every so often, I put a little cushion under my dialysis arm and gently roll onto my non dialysis side quite comfortably as I prefer sleeping on my side. If your arm is well secured (I cover my taping with a Tubifast gauze sleeve) this isn’t a problem. I can even roll onto my dialysis arm side for a while if I am careful but I don’t sleep on this side.

Providing I don’t put on much more than around 2.5 litres, doing alternate night dialysis doesn’t make me feel unwell at all and it feels like you are having 2 whole days off because it is only your sleeptime that is interfered with. Bloods are still good, no food restrictions and stable blood pressure. For me, a happy medium and resolves any sleepless issues.

Cheers
Mel

Hey, Beachy! How is your elbow healing?

Thanks for asking, Dori! It’s going really well, bone growing back and getting my strength back. Think starting physio so early was the key and swimming as soon as I could. Back on my bike (with greater respect for that front brake) this weekend. Yee haa!!!

Wow, sounds like you’re doing really well. Glad to hear you’re back on your bike! :smiley:

Has anyone come up with a good way to secure the connections between the needle lines and art and ven lines? I read where one person said she taped this area. But then it is hard to remove the tape at take-off.

I use two pieces of tape a couple of inches below the arterial. The first goes across the arterial and the second goes across both. They also act as ‘extra hands’ for me as I remove my needles.