I dialyzed in my home training unit on Wednesday to get checked out on a heparin pump. This following the installation of a one button medic alert system installed on Tuesday from ADT. I am now approved to do “extended”* dialysis on the System One.
My plan is to try extended dialysis over night and see how it goes. If I can sleep then I may go ahead and do all extended dialysis (five or six nights a week). If I have trouble sleeping then I will try extended dialysis on Friday and Saturday night and unextended dialysis on weekdays. I might even try 45 liters of dialysate during extended runs and 20 liters of dialysate during non-extended runs.
I am temporarily on hold while I await my 171 cartridges. I hope do my first extended treatments around the winter solstice. Will extended dialysis foretell brighter days to come? I will report my results.
The System One is not FDA approved to be marketed as providing “nocturnal” dialysis, hence the less defined term “extended”.
Good luck with the sleeping side of things Bill. I think half the battle is confidence in your needling, taping and comfort and trusting the machine. With your years of experience it should be a breeze.
With my broken arm I have gone the opposite way, from Nocturnal to short daily. Andy has to do all the set up etc so we are both finding it a real strain every day as the Freni and all the associated ‘clutter’ is so time consuming, it is doing our heads in. I wish I had never whinged about sleeping and nocturnal ;0(
Cheers
Hey ,Bill Good Luck on the new set up , I went from sd to the extended and the first month to 6 weeks were hard , with alarms from my arm moving. That was in May , now I’m sleeping better than ever. The big thing for is the time. My days are free to come and go other than shipment days.
One question what is “”“the installation of a one button medic alert system”""" I have a bed wetting alarm that is placed very near the buttonholes.
Good Luck
Bob O’Brien
[QUOTE=Bill Peckham;15220]I dialyzed in my home training unit on Wednesday to get checked out on a heparin pump. This following the installation of a one button medic alert system installed on Tuesday from ADT. I am now approved to do “extended”* dialysis on the System One.
My plan is to try extended dialysis over night and see how it goes. If I can sleep then I may go ahead and do all extended dialysis (five or six nights a week). If I have trouble sleeping then I will try extended dialysis on Friday and Saturday night and unextended dialysis on weekdays. I might even try 45 liters of dialysate during extended runs and 20 liters of dialysate during non-extended runs.
I am temporarily on hold while I await my 171 cartridges. I hope do my first extended treatments around the winter solstice. Will extended dialysis foretell brighter days to come? I will report my results.
The System One is not FDA approved to be marketed as providing “nocturnal” dialysis, hence the less defined term “extended”.[/QUOTE]
I have one of those alarms for under the fistula and a water sensor for the cart top too. The one button medic alert is required by my provider because I live alone.
[quote=beachy;15222]Good luck with the sleeping side of things Bill. I think half the battle is confidence in your needling, taping and comfort and trusting the machine. With your years of experience it should be a breeze.
With my broken arm I have gone the opposite way, from Nocturnal to short daily. Andy has to do all the set up etc so we are both finding it a real strain every day as the Freni and all the associated ‘clutter’ is so time consuming, it is doing our heads in. I wish I had never whinged about sleeping and nocturnal ;0(
Cheers[/quote]
Wish I knew something that would help Mel - how are you feeling renal-wise?
[QUOTE=Bill Peckham;15220]I dialyzed in my home training unit on Wednesday to get checked out on a heparin pump. This following the installation of a one button medic alert system installed on Tuesday from ADT. I am now approved to do “extended”* dialysis on the System One.
My plan is to try extended dialysis over night and see how it goes. If I can sleep then I may go ahead and do all extended dialysis (five or six nights a week). If I have trouble sleeping then I will try extended dialysis on Friday and Saturday night and unextended dialysis on weekdays. I might even try 45 liters of dialysate during extended runs and 20 liters of dialysate during non-extended runs.
I am temporarily on hold while I await my 171 cartridges. I hope do my first extended treatments around the winter solstice. Will extended dialysis foretell brighter days to come? I will report my results.
The System One is not FDA approved to be marketed as providing “nocturnal” dialysis, hence the less defined term “extended”.[/QUOTE]
Bill,
Have you ever done nocturnal txs before on other model machines or will this be a first for you? In order to know for sure if NxStage extended txs are really nocturnal in quality, as Prof. Agar seems to doubt, I guess one would have to do nocturnal txs on both a FR and NxStage to see the difference. Looking forward to your observations.
[quote=Jane;15230]Bill,
Have you ever done nocturnal txs before on other model machines or will this be a first for you? In order to know for sure if NxStage extended txs are really nocturnal in quality, as Prof. Agar seems to doubt, I guess one would have to do nocturnal txs on both a FR and NxStage to see the difference. Looking forward to your observations.[/quote]
I did nocturnal twice on the Aksys - once every other day for 5 weeks and once six nights a week for 6 weeks. A lot of water has gone under the bridge since then; not sure if a comparison is possible.
People who have switched from FMC to NxStage (I’m thinking Cathy and Mel (the husband not beachy)) report little or no difference.
My partner was on Freni Nocturnal for about 5 years… And switched to Nocturnal NxStage w/Pureflow. for about a year… She feels about the same but we have been having problems with her blood pressure… High Blood Pressure again and even on MEDs for high blood pressure, Also her Potassium is low and on K pills, also she has been put on phosphate binders again… It seems as though the NxStage is not as good as the Fresenius. Have tried just about everything to try to get her blood pressure down again… Tried to lower her dry weight so low that she was cramping all the time… Increased the dialysate to 29.5 ltr from 20 ltr, increased the time from 7 hrs to 8 hrs, FF from 25 to 30. Can’t figure whats going on… Will be getting some 2K SAKs soon to try to see if we can get her potassium back up… All of this troubles started about three months on the NxStage.
What about a moisture sensor for under the dialyzer, too? The connection between the dialyzer and lines is another potential area for a blood leak to occur.
My partner was on Freni Nocturnal for about 5 years… And switched to Nocturnal NxStage w/Pureflow. for about a year… She feels about the same but we have been having problems with her blood pressure… High Blood Pressure again and even on MEDs for high blood pressure, Also her Potassium is low and on K pills, also she has been put on phosphate binders again… It seems as though the NxStage is not as good as the Fresenius. Have tried just about everything to try to get her blood pressure down again… Tried to lower her dry weight so low that she was cramping all the time… Increased the dialysate to 29.5 ltr from 20 ltr, increased the time from 7 hrs to 8 hrs, FF from 25 to 30. Can’t figure whats going on… Will be getting some 2K SAKs soon to try to see if we can get her potassium back up… All of this troubles started about three months on the NxStage.
HemoHelper[/QUOTE]
Do you think the problem is with the NxStage machine or that you don’t have the appropriate prescription/settings? What does your nurse trainer and NxStage clinical support say about this? I often do not get correct guidance/answers from either one and have to call someone higher up in the company.
Hi Bill,
Bood luck. As you know we do nocturnal also. If you tape your arm really well you will be able to move it around. Sleeping well takes a little bit to get use to. But Ralph is doing really well.
Bill I put water detectors on all four corners under the cycler / on top of the Pureflow in the ridge.
Can’t remember if you are using the pureflow yet.
One other thing I would do is put an extra clamp on the blue tip on the top of the dialysier. That clamp seems to not always work well.
I think that is a great idea for the one button medic alert. What will you do when you travel?
We do nocturnal when we travel an have not had a problem.
Happy Holidays.
Pat
I didn’t sleep well last night I was cold for one but I went and purchased an electric blanket. I need to rethink my dialysis room for this - I could use some strategically placed shelves and a better table for the laptop. I’m going to do an extended run tonight. I’m going to see how this schedule goes for a while but I may try daily extended early next year.
Bill, what’s the laptop for? You’re supposed to be sleeping!
BTW, one of the problems I had when trying nocturnal in-center a few years ago was the fact it was too damn cold. My feet were especialy cold because of my neuropathy and I couldn’t overcome the freezing feeling. It was one of the contributing factors as to why I went back to CHD. However, I am willing to try again at home. If I can’t hack it, I can always go back to SDD. That’s one of the benefits of HHD – we have the flexibility to change our individual schedules if we choose. That is as long as we have the concurrence of our nephrodocs.
Warm PJs, socks and an extra blanket work wonders. I find if my shins aren’t covered with clothing I get cold. I presume you would have your temp turned up already.
Cheers
I posted about my extended dialysis on NxStage on my blog today. Not sure if i should cross post or link - but I’m afraid I don’t have a definitive answer for you: I do think I feel a bit better generally. I have slept better.
I think extended is going to be a good addition. And Jane the 171 cartridges seem to clear better than the 170s. It’s probably the added heparin because they are the same dialyzer just a small tubing difference.
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.