I am considering changing to nocturnal home hemo. I have had a home machine for years and am presently dialyzing 4 nights a week for 3 hours, but my blood pressure stays pretty high. My doc thinks nocturnal might solve the problem. I am scheduled to begin training soon on a Fresenius “Baby K”
machine.
I have a lot of questions. Does your helper sleep in the same room or in another? Are you wakened often with alarms? Are you able to sleep well?
How do you manage the concentrates? I am told I would dialyze for 8 hours every other night. How would you manage enough concentrates to last for that long?? Do you have any problems with the machine? Do you feel better and have better labwork?
I have so many questions and would surely appreciate any answers anyone on home nocturnal can give me.
Thanks bunches!!!
[QUOTE=monkeemusic;11950]I am considering changing to nocturnal home hemo. I have had a home machine for years and am presently dialyzing 4 nights a week for 3 hours, but my blood pressure stays pretty high. My doc thinks nocturnal might solve the problem. I am scheduled to begin training soon on a Fresenius “Baby K”
machine.
I have a lot of questions. Does your helper sleep in the same room or in another? Are you wakened often with alarms? Are you able to sleep well?
How do you manage the concentrates? I am told I would dialyze for 8 hours every other night. How would you manage enough concentrates to last for that long?? Do you have any problems with the machine? Do you feel better and have better labwork?
I have so many questions and would surely appreciate any answers anyone on home nocturnal can give me.
Thanks bunches!!![/QUOTE]
Hi there;
My partner was using the Fresenius 2008K for about 5 years. We were doing treatments 6 nights a week for 7 hours… Switched to the NxStage System one last November (2006). The reason why we switched if for the ease of use and maintanence and for portability… Travel without having to go to a dialysis clinic to get her blood cleaned… WE HAD A WONDERFUL TRIP over the Christmas holidays… spent a little over a week at her daughter’s home and did out treatments there…
I slept in the same area as the machine Why??? To keep my partner feeling safe and secure…As far as alarms. The Fresenius was a very reliable machine there were a few alarms. Most of the alarms were due to my not setting-up the machine properly… Like forgot to add acid concentrate to the jug… or forgot to lower the pump speed… Think in the five years we had probably 20 alarms at the most… Had couple of bad dialyzers. But all said and done that machine is rock solid… Yes there is a lot of maintanence that go along with machine and water system. Hope you have a very supportive team that maintains the quarterly and yearly maintanence and have the supplies to fix your machine if it goes down…
Acid concentrate… we used about a gallon for each treatment. and the Jug holds 2 1/2 gallons so we would not run out except when I forgot to add to the jug… same for the soda jug we used about 1.6 ltr but always mixed 2 ltrs.
After about a month of using the machine our sleep patterns returned back to normal… the machine is very reliable with very few ALARMS… My partner uses a cathater for her treatments. So we were never worried about becoming disconnected. We taped the connector with tape and that kept it from coming loose.
Do you feel better… She has never felt better… Her blood work has been really good and she feels like a new person. You would not think she has had endstage renal for 18 years if you saw her. She has been doing really well since on nocturnal. No High Blood pressure meds… you know come to think of it she has not seen the emergency room for quite a while… only Hospital visit in the past 5 years was to have the cathater replaced. an outpatient visit…
Hope this hepls and hope you can get on nocturnal soon.
HemoHelper
HemoHelper you mention you switched from the Freseni to NxStage. Does your partner feel as well with the NxStage Treatments. Do you have more alarms with the NxStage? Are you still doing Noctural or did you go to daily when you switched to the NxStage?
From Our Experience. I am my fathers helper and I don’t sleep in the same room he does. When I hear an alarm, I just get up and go in his room. I love nocturnal diaysis. We use the Freseni 2008H and have been doing this over 6 years. I always make sure my setup is right and we hardly ever have alarms. We have 2 large jugs. 1 for acid and 1 for bicarb. We just fill the larger jugs for the treatments and our flow rate is reduced to 300. We also don’t have any trouble sleeping. I agree with Hemohelper the Freseni is a rock solid machine but there is a fair amount of time involved doing cleaning chores on the machine and RO. I too am changing to NxStage just for that reason. I used to run dad sometimes on the Freseni for 9hrs. just so I could be sure of 8hrs. of sleep.
I did not know that you could do nocturnal with the NxStage machine. I would love to hear from those of you who are. How many hours and how many times a week do you dialyze? Are there many alarms to keep you from sleeping well? Do you as well and is your labwork as good as on the Fresenius? How would you compare the Fresenius and the NxStage?
We have been doing nocturnal 5 nights a week with Frenenius 2008H since Oct. 06. Very dependable. Most alarms have been because he kinked his line when he was asleep. Yes we sleep in the same room-in same bed. No problems. A tech is always on call. Only alarm we had for a while was low conductivity and that would alarm about every half hour - (very frustrating). The conductivity level would not change on the machine. The alarm would not even last long enough for you to push mute. The tech figured it had something to do with the computer and they were goingto bring us a new machine and take that one back to fix it. One night when we went to set up the cond would not go up at all. Phoned tech he told us several things to try. Told us to unscrew the dialiaze connector tha goes in the bicarb bottle and check the little screen that is there. Problem was it was dirty. Took it out and cleaned it and haven’t had any problem since.
My wife has been used 6/week nocturnal for about 5 years. We use a 2008K except when traveling when we use NxStage. In our view nocturnal doubles the benefits of short daily over 3x in-center dialysis. You feel better, no binders, no diet restrictions, normal blood pressure without meds, etc. – and you get your life back. We don’t start untill 9:30 PM and are done , including cleanup by 7:30 AM or so.
As others have noted Fresenius machines are rock-solid and precise. Benefits of NxStage are easier learning, no R/O maintenance or water testing and easier cleanup – and you can travel with them! My wife feels good using either. Only problem we’ve experience with NxStage is it won’t run at e low dialysate rates without dialysate air alarms which can be “worked around” by using more dialysate and hence a higher dialysate rate.
Just as few people who have done short daily dialysis at home would ever voluntarily go back to in-center 3x dialysis, I think few people who have gone on to nocturnal would ever go back to short daily. We did when we first used NxStage and hated it – not the machine but the big hole in our daily life it took up.
In my view you would be better off with 6x rather than every other night, particularly if your blood pressure is problematic. If you do there is a good chance your lab work will return very close to normal. You top off the bicarbonate jug just before going to sleep which will get you about 9 hours. We adjusted quickly to the sound – it’s about like living in an apartment near the railroad tracks! You do need to cover up the display and lamps as the light can be bothersome.
You’re on am excellent path – good luck!
Mel
[QUOTE=monkeemusic;11950]I am considering changing to nocturnal home hemo. I have had a home machine for years and am presently dialyzing 4 nights a week for 3 hours, but my blood pressure stays pretty high. My doc thinks nocturnal might solve the problem. I am scheduled to begin training soon on a Fresenius “Baby K”
machine.
I have a lot of questions. Does your helper sleep in the same room or in another? Are you wakened often with alarms? Are you able to sleep well?
How do you manage the concentrates? I am told I would dialyze for 8 hours every other night. How would you manage enough concentrates to last for that long?? Do you have any problems with the machine? Do you feel better and have better labwork?
I have so many questions and would surely appreciate any answers anyone on home nocturnal can give me.
Thanks bunches!!![/QUOTE]
I agree with Mel. We would NEVER go back to 3x a week voluntarily. Hubby says he feels better than he ever did. Blood work is basically normal.
Mel write:>>Only problem we’ve experience with NxStage is it won’t run at e low dialysate rates without dialysate air alarms which can be “worked around” by using more dialysate and hence a higher dialysate rate.<<
How much more dialysate and how high a dialysate rate?
[QUOTE=monkeemusic;11950]I am considering changing to nocturnal home hemo. I have had a home machine for years and am presently dialyzing 4 nights a week for 3 hours, but my blood pressure stays pretty high. My doc thinks nocturnal might solve the problem. I am scheduled to begin training soon on a Fresenius “Baby K”
machine.
I have a lot of questions. Does your helper sleep in the same room or in another? Are you wakened often with alarms? Are you able to sleep well?
How do you manage the concentrates? I am told I would dialyze for 8 hours every other night. How would you manage enough concentrates to last for that long?? Do you have any problems with the machine? Do you feel better and have better labwork?
I have so many questions and would surely appreciate any answers anyone on home nocturnal can give me.
Thanks bunches!!![/QUOTE] Well Hi Thier : So you want to go to nocturnal, glad to hear that you have that option.
Do yourself Justice… go to this site…http://www.nocturnaldialysis.org/.
The author of this site Prof John Agar is well know in the dialysis community as a leader and advocate of nocturnal dialysis. The site is just full of easy to read and understand material ( not overly technical )… end to end… take my word on this I’ve been through it often… as a matter of fact I use it almost daily to pick up information that I use. He has a question and answer section (FAQ"s). You want answers … go for it…and like I say do yourself Justice.
Let me take this just one step further… In my opinion every dialysis clinic should have a brochure/pamplet… mini booklet whatever … to give to those going on dialysis so that they would have ALL options… The idea of pushing PD and conventional " maintanance " dialysis has to STOP !
Personally we ( my son Jessie ) almost got trapped into PD, as we were told it was the best… There was never any mention of nocturnal not once. Honestly they can thank God that I found out about nocturnal before they put a catheter in my boy ! Heads would have rolled… I shit you not !
Finding Prof Agars site saved a lot of guessing… just a wonderfull site so like I say do yourself Justice… visit this site !
Richard C/O Jessie
[QUOTE=Heather1;11982]Mel write:>>Only problem we’ve experience with NxStage is it won’t run at e low dialysate rates without dialysate air alarms which can be “worked around” by using more dialysate and hence a higher dialysate rate.<<
How much more dialysate and how high a dialysate rate?[/QUOTE]
Since you are operating at the edge each machine may be somewhat different. With our present machine we need to use a dialysate rate of at least 3.5 L/hour to avoid dialysate air alarms. Multiply that number by the number of hours you plan to run and you’ll get the amount of dialysate you need.
Mel
[QUOTE=Mel;11992]Since you are operating at the edge each machine may be somewhat different. With our present machine we need to use a dialysate rate of at least 3.5 L/hour to avoid dialysate air alarms. Multiply that number by the number of hours you plan to run and you’ll get the amount of dialysate you need.
Mel[/QUOTE]
Do I have this right- 8 hrs. = 28 liters or 5 1/2 bags of dialysate? Also, what blood pump speed do you run at?
Mel writes:“My wife has been used 6/week nocturnal for about 5 years. We use a 2008K except when traveling when we use NxStage.”
Do you mean that you prefer 2008k over Nxstage for home use…why?
Country Girl;
Yes, she feels the same … We are still on Nocturnal. Her blood work has been about the same. Having to start to use Phoslo as her phosphorus is a bit low and her potasium is a bit lower. But other that that she is doing well.
The Nx stage has more alarms… Actually it has this one that is constantly causing me sleepless nights… (ALARM yel #14) Air in the dialysate line… Just got a new machine two days ago and it is also alarming with YEL 14… Guess I will call them at NxStage and report to them that the exchange machine is still alarming #14… It is probably because the pump speed is too slow and it is not able to pull the air bubbles thru the system and eventually it collects into a big bubble and sets the alarm off… cIf they can figure out a way to correct this there is nothing better than NxStage System One…
HemoHelper
Yes – 220 or so
I run eight and half hours with 25 liters at 3.1 liters an hour and have no problems what so ever???
LSB
[QUOTE=Leafsunbear;12030]I run eight and half hours with 25 liters at 3.1 liters an hour and have no problems what so ever???
LSB[/QUOTE]
What blood pump speed do you run?
- I am not sure about this, but what does blood pump have to do with dialysate rate?
LSB
[QUOTE=Leafsunbear;12044]250. I am not sure about this, but what does blood pump have to do with dialysate rate?
LSB[/QUOTE]
As for myself, I am in the process of reading over these posts which explain how to avoid the #14 alarm and I just wanted to know if blood pump speed had to be adjusted to go along with the change in the other factors.