What do you wish you knew before you started NxStage?

[poohkari]

Wade and I start training August 6 for his NxStage. I've read every post here, but, if you're on NxStage and wish there was something someone told you before you started, what would it be? Thanks!

[skyedogrocks]

Nxstage is wonderful for Rob, he feels so much better. 

However, it takes up a big chunk of time in a day.  Rob still works, he's out of the house by 5:30 am home by 4:00pm.  So, after eating dinner and dialyizing for 2 1/2 - 3 hours we don't have much time for us in a day.  He does have 2 days off and on the weekend he gets it done early, but still it takes up a lot of time.

Also, it took us a while to get comfortable with everything.  I had a huge fear of not getting eough of the air out of the lines or touching any of the connections & infecting him.  Rob also has issues with his fistula and has to go into the center for them to put his needles in at times.  He has a 2nd fistula that is almos there, but needs to get stronger.

Overall though, I am glad he can do this at home.  He can enjoy the comforts of home, his big screen tv and the internet while dialyzing. 

Good luck!

[jbeany]

Yes, it will still take up quite a bit of time every day. Overall, it will take less time in a week than in-center, because I won't spend the two hours on the road and it is less time hooked up, of course.  I should end up saving about 15 hours a week.  I was glad to find out I could do the rotating 3 on, 1 off schedule instead of a set 6 days.  That gives me a few weeks a month with only 5 days, and some with 6.

What I didn't know... I'm only done with the first week of training, so there's still lots to learn - but here's what made the biggest impression this week. .

The NxStage doesn't require a prescription "run time".  There's no set 4 hours or 3-1/2 hours.  Instead, the doc prescribes an amount of disalyate.  How long you are on the machine depends on a combination of how much fluid must be processed and how fast your pump speed is set at.  The time may vary every run, depending on how much fluid you have to take off, and what you are able to set your speed at that day.  If you are having access problems, you may need to run at a lower speed temporarily.  The average patient starts at 20L.  Larger patients might need more.  The Pureflow makes batches of dialysate in 60 L batches.  The stuff expires at the end of 3 days, though, so you can't make a batch, run 2 days, and have a day off without wasting 20L of water. (Hence my 3-1, 3-1 schedule, instead of 3-1, 2-1 to line up with a 7 day week.)  If your Kt/V is good, (they want it over 2.1) they should be able to lower the fluid prescription.  Less fluid, shorter run, so hope for really high Kt/V!

The access pressures run differently than on a standard machine.  Arterial should be between 50 and 200.  Venous should be between 30 and 300.  If your pressures stay in range, you can up the pump speed.  The doc should prescribe a max setting. Mine is 450.  I'm not sure my access is going to handle more, so I'm good with that.  Higher pump speed also means a shorter run time.  Just jumping from 400 to 450 can cut about 25 minutes off.

Even with the Pureflow, and not using the pre--bagged, there are a huge number of boxes that must be stored. They are very big, and some are quite heavy.  I want to know what idiot decided to package the filters for the pureflow in twos - those are to big and heavy for me to move without messing up my graft arm.

The NxStage should be continuously hooked up to a phone line.  The company can send software downloads directly to both the NxStage and the Pureflow.

Learning the steps to set up the machine is a snap - they give you very detailed directions.  Plus, it's pretty good about warning lights and step-by-step troubleshooting.  As long as you can manage the cannulation part, the rest is easy.

[silverhead]

What jbeany said, Sharon runs at 450, would love to increase it, but she has such a nice fistula, that I do not want to fool with it in any way, her KT/V is a little low so for right now we run 22 liters per 3 hour run, which means we have to pump out about 16 liters and make a new batch after 2 days, but then she can get 6 days a week, We are real confident that this will be reduced after she gets home and we return to some relative normalcy in our lives after the training ends late next week, already she has no more headaches at the end of treatment and her blood pressure has dropped some after only 8 days on it, I'm sure lots more benefits will be evident after the next labs come back, just the normalcy of our own home comfort, instead of being around a whole bunch of very depressed beings at the centers is worth it.......

[skyedogrocks]

It is amazing how Rob feels so much better after a dialysis session with the NxStage.  He was able to drop 2 BP Meds and the cramping is virtually gone.  His restless leg syndrome has gone away too.  He is able to feel better within 10 mins of getting disconnected, a much better way of life for him.

Silverhead & Jbeany, I'm sure as you go along you will be able to ramp up to a speed of 500.  Rob did 450 at first and his nurse slowly moved him up to 500.  Also, once you get your flow fraction figured out to get the KT/V you need, you will be able to play with 5 days a week instead of 6.  Rob's nurse worked diligently with him to get him down to 5 days a week.