Pat, with the Pure Flow do your prime and get the air out the same way its done with the bags?
Heather1,
This is my day. After I take Ralph off the System One, The PureFlow is finishing draining and I put it into a flush mode, Then disconcect everything and throw the 1 bag out. I than place the new bag in the “box” and begin to start the system for the 7hr that it takes to make the dialysate. Friday we had a power outage for just a minute and that put the timing on hold until I got home and heard it beeping. Just hit the “GO” and it started up again. Although we had to wait til 9:20pm before we could go on.
When the batch is done. I than get the System One ready and prime just like with the bags, snaping the lines to get the air out. The only difference is how the bags are attached to the System one and the batch is attached to the system one. Since we use the 60L a night I have to make a new batch everyday. The PureFlow is so much easier as I do not have to lift 9 5L bags up to the holders. If we use bags we use 45L.
Last night went pretty well, still need to figure out how to get the amount of K’s off and still work with the 60L and a reasonable Blood pump speed to get to 7.5 hours a night. Last night we ran a 500 blood pump speed with no problems . Really do not like to run the pump speed that high.
Tonite is a night off.
Tomorrow night will be week 2.
Pat
Waiting for the PurFlow SL to complete making dialysate kinda puts it in the same situation like Aksys PHD where you have to wait till its done completing its process…
Do you find that to be a problem? I mean, what am trying to say is don’t we want more flexibility? You know we control the machine, not the machine controls us? With the bagged fluid we have more flexibility over shedules and that means more freedom…now with the problem that the dialysate expires within some hours also poses a drawback? That means if we need to dispose the old dialysate we need to start all over again for a new batch…
Hmmm, I am scratching my head…
Hi Gus, For me I do not mind since Ralph uses 60L a night. So in the morning on put a new batch on and go to work. If Ralph isn’t around or doesn’t hear if there is a problem and the batch is not ready for the night,we can always use the bags. We have a weeks supply as back up.
I personally love the PurFlow, the first couple of days I had to put up the bags (9) 5L for a treatment. With my back it takes me a little time to do that.
I have spinal stenosis, arthritis and the 4th lumbar that is out of alignment. I go to a chiropractor and that helps.
By the way GUS- Loved you video! I am taking pictures and as soon as I take all that I want I will up load them and send them to you.
Last night went pretty well- I had a 612 red alarm- won’t do that again! But treatment was fine. Figureing out what I have to put in the rates and volumns so we can dialyise for 7.5 hours is pretty hard. We are also using a machine (like in the hospital) to give him the heperine all night. Last night it was alarming every couple hours, could not find why it was alarming. So just hit the reset button.
I took blood on Thursday night and Friday morning and the certer got the results today. They said they were really great. We have to go to a special clinic for Nxstage Nocturnal tomorrow AM and I will get a copy of the results.
I will get the numbers they calulate. Never did that before because it was done with the blood work. They want me to change the FF rate from 30 to 33 to try to see if we can get a lower blood pump speed than 500.
He does well at that speed but it does not leave much room as 500 is max.
He says he really feels great. Tomorrow night I will be doing the monthly’s and that will give us the info we need to see how the Phosphorus and Potassium is running.
For me the Nxstage and PureFlow is tops, I feel I have just got a whole new life. I have gained 75% more time to do other things “I” enjoy. I know I may sound selfish but I would not stop doing this for my hushand my LIFE partner. I truly hope we have at least another 20 years together.
Pat
Pat, You aren’t being selfish, it’s only human to want to find an easier way to do things. I will be my dad’s partner for life but I too would rather spend less time on dialysis duties if it’s possible. I was wondering how it was going to work out as far as being able to run at the Blood Pump Speed you want and the time you want. Doesn’t sound to easy, keep us posted. Glad to hear Ralph is feeling great and the labs are looking good.
Thanks for all your efforts.
Marty
Conrats on all the hard work Pat. Great to hear that you are loving it, getting good blood results for Ralph and having more time for you!! Fantastic!!
Cheers
[QUOTE=Pat Colongione;11082]Hi Gus, For me I do not mind since Ralph uses 60L a night. So in the morning on put a new batch on and go to work. If Ralph isn’t around or doesn’t hear if there is a problem and the batch is not ready for the night,we can always use the bags. We have a weeks supply as back up.
I personally love the PurFlow, the first couple of days I had to put up the bags (9) 5L for a treatment. With my back it takes me a little time to do that.
I have spinal stenosis, arthritis and the 4th lumbar that is out of alignment. I go to a chiropractor and that helps.
By the way GUS- Loved you video! I am taking pictures and as soon as I take all that I want I will up load them and send them to you.
Last night went pretty well- I had a 612 red alarm- won’t do that again! But treatment was fine. Figureing out what I have to put in the rates and volumns so we can dialyise for 7.5 hours is pretty hard. We are also using a machine (like in the hospital) to give him the heperine all night. Last night it was alarming every couple hours, could not find why it was alarming. So just hit the reset button.
I took blood on Thursday night and Friday morning and the certer got the results today. They said they were really great. We have to go to a special clinic for Nxstage Nocturnal tomorrow AM and I will get a copy of the results.
I will get the numbers they calulate. Never did that before because it was done with the blood work. They want me to change the FF rate from 30 to 33 to try to see if we can get a lower blood pump speed than 500.
He does well at that speed but it does not leave much room as 500 is max.
He says he really feels great. Tomorrow night I will be doing the monthly’s and that will give us the info we need to see how the Phosphorus and Potassium is running.
For me the Nxstage and PureFlow is tops, I feel I have just got a whole new life. I have gained 75% more time to do other things “I” enjoy. I know I may sound selfish but I would not stop doing this for my hushand my LIFE partner. I truly hope we have at least another 20 years together.
Pat[/QUOTE]
[quote=Pat Colongione;11082]Hi Gus, For me I do not mind since Ralph uses 60L a night. So in the morning on put a new batch on and go to work. If Ralph isn’t around or doesn’t hear if there is a problem and the batch is not ready for the night,we can always use the bags. We have a weeks supply as back up.
Oh okay, seems the PureFlow SL is a GODSEND for those of you on Nocturnal…and basicly, you will always have one weeks backup of bagged dialysate…that sounds easy enough
I personally love the PurFlow, the first couple of days I had to put up the bags (9) 5L for a treatment. With my back it takes me a little time to do that.
I have spinal stenosis, arthritis and the 4th lumbar that is out of alignment. I go to a chiropractor and that helps.
Oh my, am sorry about that. You sure don’t give up that easily! I have to tell you that I have bad bad carpal tunnel at my hands and it seems its just getting worse(caused by amyloidoisis)…but still I struggle at getting the machine setup which I fairly do quite well. The extra hand support that I have around me also helps greatly. One day or the other we will always needs someone. It’s great to see that the PureFlow SL will relieve the tension and pain for you.
By the way GUS- Loved you video!
Are you referring to the “Blue Hawk” video?
I am taking pictures and as soon as I take all that I want I will up load them and send them to you.
Sure thing, I’ll standby…
Last night went pretty well- I had a 612 red alarm- won’t do that again! But treatment was fine. Figureing out what I have to put in the rates and volumns so we can dialyise for 7.5 hours is pretty hard.
Was this for the Cycler or the PureFlow SL or both?
We are also using a machine (like in the hospital) to give him the heperine all night. Last night it was alarming every couple hours, could not find why it was alarming. So just hit the reset button.
I took blood on Thursday night and Friday morning and the certer got the results today. They said they were really great. We have to go to a special clinic for Nxstage Nocturnal tomorrow AM and I will get a copy of the results.
My goodness, that sounds promising! How is Ralph feeling? Is there a difference compared to the last machine used?
I will get the numbers they calulate. Never did that before because it was done with the blood work. They want me to change the FF rate from 30 to 33 to try to see if we can get a lower blood pump speed than 500.
He does well at that speed but it does not leave much room as 500 is max.
He says he really feels great. Tomorrow night I will be doing the monthly’s and that will give us the info we need to see how the Phosphorus and Potassium is running.
500 blood pump speed all night? How fast was it on last machine?
For me the Nxstage and PureFlow is tops, I feel I have just got a whole new life. I have gained 75% more time to do other things “I” enjoy. I know I may sound selfish but I would not stop doing this for my hushand my LIFE partner. I truly hope we have at least another 20 years together.
Pat
Your not selfish, your a winner! You know how to make the right choices for both you and Ralph…both of you are doing good to youselves and making the most out of life!! I am glad your getting some extra freedom on your life…
[/quote]
Ditto! Pat you are a real trooper. We are all rooting for your success!
Sorry All for not posting last night on what went on on Monday night with change in FF to 33. What a difference, I was able to get the 7.5 hours at a blood pump speec of 450. I really felt more comfortable about that.
Now as for yesterday and last night (Tuesday). I took the day off work to attend an all day seminar for Travel. Had to leave in middle of the morning to go to Ralph’s Clinic at center. When we got there they told us that his numbers pre & Post were better than when on the Fresi and how impressed they were. (Sorry the paper with the numbers are at home and I am at work).
Thursday night I will be doing the monthly’s and by Monday we should know how every thing else is. They wanted to wait umtil we were on the FF33 for a few days. So Thinks are really looking GOOD!. Went back to the seminar and left there at 9:00pm rusing home to get him on. Went to do the Chlormine check on the PureFlow and that was fine. BUTTTTTTT hit the stop button instead of the GO button. Well—That throught the system into DRAIN.
Once you do that you need to hang it up and finish draining because there is no way to back up. At least that was what the tech at Nxstage said. However they are in the processing of changing the software in the next update to handle this. But That did not help me last nigth. Had to put up 9 bags and run on the bags all night. Everything else was fine. So Gus having those bags are a real necessity! I have to do my order today for delivery in 2 weeks. So I hope no more problems. I have used up 27 bags and they only sent me enough for doing a week at 30L. I have been using 45L as back up.
So that is today’s saga.
Pat
Well all after tuesdays fiaso, last night was a breeze. I really needed that sleep.
Each day it gets better and better.
Just ordered supplies today and our service rep was wonderful!
She than moved us to another rep that handled returns of cartridges they sent us (without the heperine line) that need to be returned- 5 boxes.
UPS should pick up tomorrow. Fast work!
I will draw bloods tonight and tomorrow am to send off to California tomorrow for SATURDAY delivery.
Pat
Pat wrote:“They want me to change the FF rate from 30 to 33 to try to see if we can get a lower blood pump speed than 500”
Can anyone explain FF and how a FF # is decided? I read in another thread that by increasing the FF you cut time off the tx.
Pat wrote:“We are also using a machine (like in the hospital) to give him the heparin all night. Last night it was alarming every couple hours, could not find why it was alarming. So just hit the reset button.”
Pat,
Did you ever find out why the alarms were occuring so you don’t have to keep waking up to keep hitting the reset button?
“Pat wrote:make batch this morning and everything was going fine. Left to do errons came home this afternoon at 4 and it was beeping. Looked and it was on hold because of a power outage. Nothing else in the house showed we had a power outage so I think it may have only been for a second. This tells me it is very sensitive. So will go on a little later tonight. That is ok since I don’t have to work tomorrow.”
Pat,
A UPS would of prevented this.
Pat, first I haven’t read this whole thread. My reason is, I am not excited about the the pure flow system. But anyways to get on with what I wanted to post to you. With the Heparin pump, we always put more heparin in the syringe then what we use for the night. So if I am going to use 4.8ml I will draw up like 6mls. I use about 600 units per hour for an 8 hour run. This seems to avoid any alarms in the morning. I am not sure if this has anything to do with the alarms you are experiencing, but I wanted to share our little trick with you. As for UF and dialysate flow rates, take the amount of dialysate or UF and divide it by the number of hours you want to run. so for me I use 25lt of dialysate and I run for 8 hours. 25 divided by 8 = 3.125. Round the second number after the decimal so that you have 3.1. If I want to shorten the treatment. 25 divided by 6 = 4.166 , round it to 4.2. Now for my UF say I want to pull off 2kgs in 8 hours, 2.0 divided by 8 = .25 . Same thing here if I want to shorten tx, 2.0 divided by 6 = .333, round it to .33 . My FF adjusts its self to what math I enter into the machine. I also run a 250 blood pump speed though, so maybe mine is a bit different then his.
Hope some of this helps…
Peace;
LSB
LSB I am glad you posted that. I want to switch to the NxStage and I was wondering if I would be able to run at a lower blood pump speed (250) as most of the NxStage users seem to run at high speeds. I will also being going to nocturnal. Do you run 6 nights a week? What puts the damper on your excitement about the pure flow system?
Marty
Leafsunbear,
I finally figured out what the problem was with the heperine, I had a very very small kink in the line. If I am very careful and line the machine very carefully, I have no alarms. I am sorry you don’t like the PureFlow. I think it is a GOD send. I make a new batch every morning. We use 60L a night which is the whole batch. That is also why I have a problem getting the time I want. That really changed with the 33FF. What FF rate do you run at? Last night we ran for 8.5 hours and I was able to get the pump speed down to 370 which is better than it has been running.
By the way, I forgot to get the post bloods the other day so I will do all the bloods pre Monday night and post tuesday am. I will send them on Tuesday and we should have a report by Wednesday.
Pat
Country Girl Marty,
I know you will love the whole system! I feel so free. I was able to go to 2 craft fairs today. I would not have been able to do that on the other system. There was always something to clean.
Once you have done the process a few times it is really easy!
Ralph says he feels GREAT!
Happy Thanksgiving to all!
Pat
[QUOTE=Pat Colongione;11155]
Last night we ran for 8.5 hours and I was able to get the pump speed down to 370 which is better than it has been running.
Pat[/QUOTE]
Have never heard of anyone doing nocturnal at a pump speed higher than 200-250. Woudln’t there be safety concerns riunning higher than that?
Pat, Thanks for the good word. I can use a lot of free.
Heather1, you need to remember we are monitored by internet. Because we are using 60L it is hard to get a 250 blood pump speed.
Went to start new batch this morning for tonite and pressed the GO and it said the park needed to be changed. We have only used it about 2 weeks. Called Nxstage and they were as supprised as I was. They wanted to know if we were on well water and we are not. We have city water. They said not everyone’s city water is as good ad they think. Changed pack and now making batch to be ready for tonight.
Have a good day to all.
Pat