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Author Topic: Thinking about doing NxStage...  (Read 6166 times)
Krisna
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« on: November 21, 2013, 09:47:41 PM »

I am considering NxStage but the one thing putting me off is the buttonhole part.  Is this really necessary?  There is no way in h-e-double hockey sticks I could ever do that!  My hubby does my needles for me even though I go in center.  And I have a pretty large access with lots of room to spread the punctures out.  Basically my whole upper arm is usable.  The old one lasted 21 yrs and developed the vein in the upper arm so it was pretty much ready when the made it. 
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Nov. 1979 - Diagnosed with glomerulonephritis of unknown origin by Dr. Robert
                  Hickman
Dec. 1979 - Diagnosed with Viral Pneumonia
Late Dec. 1979 - Emergency surgery to place a Scribner Shunt in left arm for dialysis
Jan. 1980 - Start hemodialysis until recovered from viral pneumonia
Feb. 27, 1980 - Receive 5 antigen living related transplant from father
Mar. 3, 1987 - PTH removed and part of one placed in left arm.  Fistula also placed in right arm.
Sept. 1988 - Start hemodialysis
Feb. 4, 1989 - Receive 6 antigen perfect match cadaveric transplant
Jan. 1994 - Return to hemodialysis
Oct. 18, 1996 - Receive 6 antigen perfect match cadaveric transplant
Nov. 22, 1996 - Emergency surgery to repair aneurysm to artery in kidney
Dec. 20, 1996 - Emergency surgery to repair aneurysm.  Kidney removed due to infection which has spread down right leg to abt mid thigh.
Apr. 1997 - Arterial bypass surgery to restore arterial blood flow to right leg
July 29, 1998 - Receive 6 antigen perfect match cadaveric transplant
Sept. 6, 2002 - Return to hemodialysis
Dec. 7, 2002 Sm. intestine ruptures while home alone. Still conscious upon arrival at hospital.
Dec. 8. 2002 - Surgery to repair ruptured bowel.  The prognosis is not good.  Surgeon tells family to prepare for the worse.  Spend a week in a coma and 3 months in hospital.  Takes abt a year and a half to completely recover.
kporter85db
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« Reply #1 on: November 21, 2013, 10:02:13 PM »

This may depend on your centers policy, but you do not need to use buttonholes to use NxStage. We just got trained on NxStage and I'm on a chest cath, but I know there are people in our center who use a fistula without doing buttonholes.
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May/2010 Sulfa based antibiotics killed my already weakened kidneys, almost
Feb/2011 PD catheter placed
July/2011 Started Peritoneal Dialysis
Nov/2013 Started NxStage 5 days/week

Ken
obsidianom
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« Reply #2 on: November 22, 2013, 09:28:23 AM »

Of course you can do rotating sharp sites. We actually switched to that after we had trouble with buttonholes. Buttonholes are not for everyone anyway. They are potentially more dangerous anyway as buttonholes can be prone to infections. I feel either way has good and bad points so go with whichever you wish. We actually find its easier with sharps as we dont have to be as careful worrying about infection risk. I am less stressed doing the sharps now.
I love Nxstage. My wife feels tons better than traditional dialysis. She acttually perks up during each treatment and feels better after. We do it 5 days per week for 3 hours at 30 liters. We run blood at 350 and dialysate at 10.0.      Good luck.!
« Last Edit: November 22, 2013, 09:29:42 AM by obsidianom » Logged

My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
CebuShan
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« Reply #3 on: November 22, 2013, 11:25:47 AM »

 When I was in center, they started buttonholes on me. Then when I started training for NxStage, I tried to use the buttonholes but they weren't at a good angle for me, so I made my own! I have on occasion had a problem with my button holes and used sharps (unlike the center, I'm NOT going to keep digging around!). I think it's all personal preference.
Good luck to you!
I can't believe how much better I feel since using NxStage! I really didn't realize how bad I was feeling before!
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Krisna
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« Reply #4 on: November 23, 2013, 12:04:32 AM »

Yeah, I don't know my center's policy but I won't let them make me do buttonholes.  The reason being, my last Fistula developed an aneurysm after a very short time from going in the same spot all the time.  The surgeon didn't fix it so we didn't have a choice.  It wasn't until I had switched doctors and the access clotted that it was revised.  Basically they had to bring the vein closer to the surface.  Opening up a lot more room.  So, aside from not wanting to stick myself , I am also afraid of getting an aneurysm in my current Fistula.

Thanks!
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Nov. 1979 - Diagnosed with glomerulonephritis of unknown origin by Dr. Robert
                  Hickman
Dec. 1979 - Diagnosed with Viral Pneumonia
Late Dec. 1979 - Emergency surgery to place a Scribner Shunt in left arm for dialysis
Jan. 1980 - Start hemodialysis until recovered from viral pneumonia
Feb. 27, 1980 - Receive 5 antigen living related transplant from father
Mar. 3, 1987 - PTH removed and part of one placed in left arm.  Fistula also placed in right arm.
Sept. 1988 - Start hemodialysis
Feb. 4, 1989 - Receive 6 antigen perfect match cadaveric transplant
Jan. 1994 - Return to hemodialysis
Oct. 18, 1996 - Receive 6 antigen perfect match cadaveric transplant
Nov. 22, 1996 - Emergency surgery to repair aneurysm to artery in kidney
Dec. 20, 1996 - Emergency surgery to repair aneurysm.  Kidney removed due to infection which has spread down right leg to abt mid thigh.
Apr. 1997 - Arterial bypass surgery to restore arterial blood flow to right leg
July 29, 1998 - Receive 6 antigen perfect match cadaveric transplant
Sept. 6, 2002 - Return to hemodialysis
Dec. 7, 2002 Sm. intestine ruptures while home alone. Still conscious upon arrival at hospital.
Dec. 8. 2002 - Surgery to repair ruptured bowel.  The prognosis is not good.  Surgeon tells family to prepare for the worse.  Spend a week in a coma and 3 months in hospital.  Takes abt a year and a half to completely recover.
amanda100wilson
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« Reply #5 on: November 23, 2013, 07:39:40 AM »

constant site cannulation predisposes to aneurisms.  That does not include buttonhole technique.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
obsidianom
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« Reply #6 on: November 23, 2013, 07:53:12 AM »

constant site cannulation predisposes to aneurisms.  That does not include buttonhole technique.
Thats not completely true. A buttonhole with damage or other issues leaves a weakened spot in the fistula that can cause an aneurism. It is not as likely as constant sharps in a small area but it can occur. Remeber a buttonhole is still a weak spot as it is a non healed hole . It is asmall hole but still a constant hole. Each technique has its positives and negatives. I would advise each person to go with what works best or is most comfortable for you.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Simon Dog
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« Reply #7 on: March 14, 2014, 07:31:19 AM »

Made the switch from Baby K to NxStage w/pureflow.   I had 8 days of training, and am doing my first "solo run" now.   Very happy with the system, however, the alarm is not loud enough to get my attention if I have Bose noise cancelling headphones on or an sleeping.   I am having a EE friend make a optical sensor I will tape to the red alarm light and that will trigger a relay connected to a power outlet so I can have a light go on and a loud radio blare when the alarm sounds (details and schematic available once I have the unit built and tested).   Just met goal at 5x/wk 25L, but running 5x/30L since I have little interest in "just meeting" goal.
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obsidianom
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« Reply #8 on: March 14, 2014, 08:37:41 AM »

My small wife uses 30 liters at 5 days so that is the minimum you should be at. Hopefully you will get good results with 30 liters. What blood speed and dialysate speed and total time are you running?   What abou UF?   How do you feel on it?
Great idea on the alarms.  Hopefully you wont have many.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Simon Dog
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« Reply #9 on: March 15, 2014, 05:59:53 PM »

My small wife uses 30 liters at 5 days so that is the minimum you should be at. Hopefully you will get good results with 30 liters. What blood speed and dialysate speed and total time are you running?   What abou UF?   How do you feel on it?
Great idea on the alarms.  Hopefully you wont have many.

I was told 25L met the clinics goal for 5 days, but I opted for 30L.    Sounds like your doc may be more aggressive about the clearance.  I may switch to 6 days once I do this for a while.

Blood 45; FF 38 (dialysate speed varies depending on UF but is in the 9.something range while UFing; 10.something while not pulling UF); total time about 3.5 hours (real, not metered time that does not include the self test pauses).

Feeling pretty good, but I was feeling pretty good on 4 days Baby K, so I was never under dialyzed. 

The total "start to finish" time is WAY less than the Baby K.
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obsidianom
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« Reply #10 on: March 16, 2014, 04:08:14 AM »

I chose the 30 liters for my wife as I beleive we way under dialyze in the US.  Hemodoc has written extebsively about this in his blogs about maxing out Nxstage . In the US we do a bare minimum to satisfy the Medicare rules of 2.1 KT/V and our mortality rates are much higher than other countries who do more dialysis. So more is better. I dont want my wife just to meeet the bare minimum standards. Her KT/V is 3.24 although we know it is a very weak indicator of actual dialysis adaquacy.
I dont mean to be a pain in the butt, but read my post on flogging the fistula and read Dr. Agar on Home Dialyzers about this. If you are running your blood speed at 450 you are beating up your fistula badly. You are also stunning your heart. Anything over 350 is likely to cause damage.  Nxstage is volume based rather than blood speed based. It is the volume of dialysate that really matters. 
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Simon Dog
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« Reply #11 on: March 16, 2014, 06:55:38 AM »

I am working towards getting that 450 down.   My center (Fresenius) is adamant that they do not support nocturnal, and have pulled home machines from people who did nocturnal in defiance of instructions.

My current plan is to complete my advanced warning system (red light will trigger a small alarm immediately, and a very loud one that will wake anyone up in the house if it remains un silenced for more than a minute), then push to convince my doctor that this gives me proper emergency coverage during nocturnal.

I recognize that I am only partway on the journey to optimal dialysis treatment.    The journey will only be complete when I am running nocturnally at a nice gentle flow rate.  In the mean time, I have to work with the constraints of my center to keep getting their support.

What is clear is that despite having an excellent doctor, nobody "in the system" is pushing to get me the best treatment possible.  That job rests on me alone.

It is interesting that NxStage is so confident of the low arterial pressures on nocturnal that their noctural cartridge (171) does not even have a pressure pod.   It also has longer lines.

The journey continues.

Thank you Obsitianom for your advice.  It is most helpful and is being taken most seriously.
« Last Edit: March 16, 2014, 06:56:55 AM by Simon Dog » Logged
obsidianom
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« Reply #12 on: March 16, 2014, 09:19:28 AM »

Just to help you with the time and blood speed, I did a generic calculation for a male 220 lbs(100kg) at 6 ft 2 inches .  I dont know how close this is to you but here is what I got. The volume recommended is  40  liters .    What is really interesting is that with a blood speed of 450 , then the same parameters at a blood speed of 350 the only difference was, it recommended 10 minutes longer at 350 then 450. This is at 5 days per week.   350 blood  speed was 3hours 30 min. and 450 blood  speed was 3 hours 20 minutes.   
So based on that you can see the blood speed has very little effect on the dialysis calculations.  It is really the volume that matters with NXstage. 
I hope this helps.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
estonb
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« Reply #13 on: March 16, 2014, 10:26:30 AM »

I am considering NxStage but the one thing putting me off is the buttonhole part.  Is this really necessary?

No - it is not necessary to use a buttonhole when doing home hemo (with NxStage or any other machine). The reason most clinics "push" the patient to use a buttonhole is that it is generally the easiest way for someone that does not have a lot of experience with cannulation to successfully cannulate a fistula. If a buttonhole is created correctly, it is much easier than using using sharps. However, not all buttonholes are created correctly - it all depends on the person that actually creates the buttonhole. The single, most important part of creating a buttonhole is 
to make sure that the sharp is inserted in the exact same position each and every time it is inserted while making the track for the buttonhole. It helps tremendously if the insertions are done by the same person each time.

In response to people who believe that using a buttonhole is a high risk cannulation technique... I have been using a buttonhole for about 10 years now and have had absolutely no infections. I think the belief that using a buttonhole is a high risk form of cannulation is over-rated. Obviously, if the buttonhole is not prepped and accessed correctly, then yes there is a high risk of infection. But conversely, when the buttonhole is prepped and accessed correctly there is an  extremely low risk of infection.

Just like when using sharps, the insertion area needs to be cleaned well with alcohol first. The next, most important, step in accessing a buttonhole is to remove the scab that formed at the access site since the previous cannulation. If the scab is not removed, then when you perform the cannulation of the buttonhole site, part (or all) or the scab is pushed into the vein. That can DEFINITELY lead to infection. But if you remove all of the scab prior to cannulation then there is really nothing specific to the buttonhole that can cause an infection (just improper aeseptic technique).

Two of the main benefits for me of using the buttonhole technique is the it is less painful overall (a blunt needle is much less painful to insert than is a sharp needle), the risk of causing an infiltration during cannulation is dramatically reduced when compared to using a sharp, as well as the risk of creating a hematoma. For me, these benefits are huge.

To sum my opinion and experience up, if the buttonhole is created correctly, it is much easier and safer to cannulate with a blunt than it is to cannulate with a sharp. I will always recommend going the buttonhole route. But it just boils down to each person making their own decision on which method is best for them (sharps or blunts).
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Took me a VERY long time and almost all of the different dialysis modalities to finally accept and be comfortable with all of the life changes associated with being a dialysis patient.
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« Reply #14 on: March 16, 2014, 07:22:24 PM »

Just to help you with the time and blood speed, I did a generic calculation for a male 220 lbs(100kg) at 6 ft 2 inches .  I dont know how close this is to you but here is what I got. The volume recommended is  40  liters .    What is really interesting is that with a blood speed of 450 , then the same parameters at a blood speed of 350 the only difference was, it recommended 10 minutes longer at 350 then 450. This is at 5 days per week.   350 blood  speed was 3hours 30 min. and 450 blood  speed was 3 hours 20 minutes.   
So based on that you can see the blood speed has very little effect on the dialysis calculations.  It is really the volume that matters with NXstage. 
I hope this helps.
Excellent info - I knew it was volume, but did not realize the difference in time was so small.   Can you give the sdetails of how to do a generic calc (I am 6', 100kg)?  I suspect my center may be using a different prescribing formula.    40L sounds a bit difficult but, if necessary, I can go to 6 days a week to get more volume.
« Last Edit: March 16, 2014, 07:25:10 PM by Simon Dog » Logged
obsidianom
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« Reply #15 on: March 17, 2014, 02:46:11 AM »

Nxstage has an on line dosing calculator. Go to their website (NxStage .com) and at top you will see a place to click on "dosing calculator".   Now you have to register with a license to use it but some of our people have figured a way to do this. I dont know what they did. If anyone out there can help please say so.
I think its a good idea for everone to be able to check their prescription.

I do have a license so I did register and use it. Your doctor or nurse can too. 
Now I ran you basic size without all your particulars and picked a kt/v of 2.5 and it still came out 40 liters.   However With a Kt/v of only 2.1 , then  , it came out to 30 liters.  (nowhere did it say 25)    .  So you see you are getting only bare minimum at 30 liters at 5 days.   BUt At 6 days and 2.5 kt/v you can do 30 liters.    So you do have some options.
Personally I do my wifes calculations with kt/.v set at 3.0 and we get that or better on our labs , so the dosing calculator works.
It is possible your clinic used the old original calculator from the past before the on line one existed . That tended to run lower volumes . They have appeared to increase the volume on the calculator since then.
My wife started off as low as 17 liters based on the original , but after the on line calculator I bumped it to 25 , then 30. she feels a lot better on 30.
Good luck with that.   I agree with Hemodoc on getting as much as possible.
You actually could do 50 liters as an example. They have a 50 liter pureflow sack so it is easy.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Simon Dog
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« Reply #16 on: March 17, 2014, 05:44:43 AM »

Thanks.   My wife has an RN license so maybe she can get access, or I can ask the RN at the clinic for a demo.

The clinic got a 40% URR for me with 25L (via lab work), which they tell me is a Kt/V of 2.0 which meets their clinics goals (talk about bare minimum).   Their estimate is that I will get a Kt/V of 2.5 with 30L - I find out this week as I draw pre/post labs tomorrow.    In any case, it would appear that their goals are less than "ambitious".

I think the solution will be 40L nocturnal and will work towards that.

Once again, many thanks for the great help.
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obsidianom
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« Reply #17 on: March 17, 2014, 06:17:21 AM »

40% UREA reduction is poor.  I wouldnt settle for that . I have my wife at 62 % or better each month now.  Her Kt/v is 3.24.  there is no reason to settle for less as the machine is quite capable of that. I dont buy the line that more frequent dialysis means you can lower the goals . That thinking is why in the U.S. we have such lowsy morbidity and mortality on dialysis.  We can do better!
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
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