Well today was a little crazy. The Center had not received our System one yet when we arrived at 7:30am. So we used one they had at the center. The trainor Cathy was great. She took her time showing me things as we went along. I am sure I was driving her nuts with questions(since we have been doing Nocturnal on the Fresenius 2008H for 2 1/2 years) After we got Ralph on the system using 30 liters of dialysate, I had to head home so I could help put the Purflow together. Our tech had to work on the computer part so when we get home we will be monitored on the internet. Got the Pureflow set up and left it running. I have to do water cultures in the am and bring them to the center to be sure the water is A-OK. I have to say the books that Nxstage gives you are really good. They use a low of pictures! That always helps. Our System One was delivered to the center right after Ralph was on.
So tomorrow we will be using his own System.
Ralph did a 4 hour treatment today and felt really good.
I will post every day for the next few weeks so I can document all his numbers as we get on the nocturnal.
Life is great! Make the most of each day and enjoy it to the fullest!
Pat
Marty, Right now we are using a higher pump speed in training but I will have to see how it works out at home. There will be a learning curve once we are home.
Heather, Yes it is a 1K. We will be doing bloods on Thursday after the 3rd treatment I believe. This will give us some info but we really won’t know how every thing will be until he is home and we are running nocturnally. I will give all details of labs. Remember Ralph is 120K.
Well yesterday we started the Purification Pack so we can do water cultures.
Well at midnight a loud Beep Beep Beep. I got up and it said there was a water leak. I checked everything and could not find leak. Read book and still could not locate the leak. Call Nxstage, very nice lady answered, asked what the problem was and than transferred me to a technician. I was on hold for what I thought was a long time (thinking this is really good ON HOLD) but it really was only about 15 seconds. A very nice man named Peter help me and walked me though what to do and what to look at. There is a water sensor on the base where the Pack fits in. Sure enough. It was wet. I took the Pack out and put it in the tub to drain. Did not have a new Pack to put in. Peter ordered 2 packs to be delivered to me on Wednesday. However I did not know that my supply order was coming today and it had 2 with the order along with 40 other boxes! Oh my! I still have 16 boxes to be put somewhere.
Now for the training today. It went really well. We actually had Ralph’s machine and set it up for the first time. I think there are 50 steps to do that.
But the instructions from Nxstage are really good. We took off 3.1K today, gave venefer IV, and learned how to do a manual rinse back if power goes out. It is not like the Ferni machine where you just put in the time, goal, etc.
The length of time depends on how fast the dialysate is and how fast the blood pump is. Today we started out running for 5.5 hrs. Than as we proceeded we raised the filtration rate and blood pump speed and wound up we did a treatment in 4hrs and 5 min. Haven’t quite figured all this out yet but will work on it tomorrow.
Pat
Pat, Have you felt any difference in the time it takes you to get on and off the machine. Can’t imagine not waiting for an acid clean or heat disinfect. Do you know what they do if the water system breaks and can’t be fixed over the phone. Are they sending out new ones or sending service reps?
My partner has just started training on the NxStage. He was told that it is not approved for nocturnal use! Do you have any resources I could use to discuss this with his clinic?
Guest, no machine is specifically approved for nocturnal use–this is something the FDA has not yet turned its attention to. Once any machine is on the market, doctors can prescribe its use. Clearly, a machine must be capable of running for 6-9 hours, there must be enough dialysate, etc., to make nocturnal use possible. A separate heparin pump may be needed. Safety monitors (e.g., bedwetting alarms under the access and also under the machine) are strongly recommended. But most standard machines and some of the newer ones as well, like NxStage, can be used for nocturnal.
Marty, When the water system “brakes” you call Nxstage technicians and they try to walk you through a fix. Just like ours on Monday night I would have had to run on bags for Monday and Tuesday nights-however if I had the extra pack I could have just put it in and run on the water. I know that Chris is having a problem with one of the water systems at the center and today she had to hook up a telephone line to the water system and the techs were working on the problem. I will know tomorrow about the out come. As for the time to get on and off it takes 18 minutes for the “prime” and you put you needles in and adjust the system for what is needed. You can really adjust your time on by adjusting the flow and the pump speed.
The getting off takes maybe 5 minutes and take everything down and throw it away. Only cleaning is whipping off the system with a clorox wipe. Talk about fast.
The way that it dialyses is a little different but what we know certainly makes it a lot easier.
Today went really well. We practiced alarms after Ralph was off. You know how Chris makes you work to figure out how to fix them. It is really easy.
Nxstage lists all the alarms what the casuse is and where or how to fix them.
I am very impressed with Nxstage’s documentation.
Pat
Dori, Thanks for answering that question. We are the second people to be on Nxstage nocturnal. Our center as you know has internet conection and observers to watch us during the night. I know there are really not to many on the Nxstage nocturnal program in the entire country.
Pat
After we finished treatment, and Ralph was off, the nurse somehow fooled the system using the remaining saline and just clamped clamps and crinked lines so I could practice what to do with alarms.
I will try to find out how exactly she did it tomorrow.
Pat
Got to center and now both water systems were down. Even the one we had used for 2 days. So we had to run on bags today.
The tech’s at Nxstage have you put a thumb drive into the System One so that the back data can be down loaded on to the thumb drive. Our head tech at our center than put it into his computet so they could figure out the problem. Once they do they will dial into the System One to make the corrections. I will have to put the thumb drive into my computer and e-mailing the info to them if I have a problem. They will give me all the info tomorrow.
They day went pretty well. Once Ralph was on the system I went back home to start a batch in the Pureflow. Just to see if my system worked. It takes 7 hours to make a batch and I will be doing a batch everyday since Ralph will be on 60l. I also learned how I will be administering heperine. As of right now I will be using the same thing they use in hospitals to administer IV things.
This does not seem to hard. We have tentatively figured out the amount I will use,
If Nxstage send me the new dialysies with the helprin line today, then I will bring one in and use it tomorrow.
So that is it for today.
I have to finish my “speach” I am giving to the nursing students at the college where I work so they know what is going on in the dialysis world.
Pat
Pat, thanks for posting all this. It is very interesting (even though it is probably light years away down under). Look forward to continued installments.
Cheers
Marty, quite frankly I think it is quieter. I will know better when we have both the Pureflow and the System One on. That will probably be on Monday night.
Sunday night we will use the bags as our water cultures have not come back yet. As for the heperin I will still be using a bolus in his are just like always and what we are using in stead of a pump is an IV infusion system (Like the one’s they use in the hospital.) It will basicly deliver the same amount as on the Fresious.
Today went really well today. Sunday night will be the initial home treatment.
Some labs came back already and looked pretty good but remember it was only to days on the system. We will be doing labs the week of the 14th and then I will let you all know how they are. Ralph says he feels the same.
So time will tell.
I just got a new camera so I will have pictures next week.
Pat
Heather1,
As of right now that is the only one they have. They maybe working on more in the near future. Not 100% sure of that. As for the batch. Each box has 2 bags with fluid in them. You take one bag and lay it in the batch bin and attach to lines or conections of the pure pack. Press start and for the next 7hrs the 60L batch is making. Once done it is good for 72 hours. So if you only need 20 L you have 3 days to use that batch. Since we will be using all 60 L. We will start a new batch each morning before I leave for work.
I hope that answers you question.
Pat