Frustrated, disappointed w/NxStage..need advice

[Dannyboy]

I recently took stock of where I'm at, re: Dialysis.   I'm frustrated and disappointed 'cause with all the effort and time I'm putting into home hemo, my results are just *barely adequate*, as measured by Kt/V and constant feeling of being too tired/wiped out.   I feel like I've been in denial about this, and well it has really gotten me down.

I'm doing at least 5 treatments a week with NxStage, treatments lasting just under 3 hours each.   Adding setup and tear-down time, it's a time commitment of upwards of 4 hours per treatment day.  (4 hours x 5 days=20 hours a week).  On top of that, there is all the miscellaneous time involved in keeping up stocks of supplies, faxing monthly inventory to NxStage, etc. etc.     If feel like my life has been taken over here, trying to keep working 8 hours a day, and coming home and spending nearly 4 hours dealing with the treatments and machine.

Ok it takes time, we all know that.  All of this time/effort would be ok, but my results frankly are very disappointing.  My Kt/V hovers just over the infamous "2.0" threshold.   I read about others on NxStage who have way higher Kt/V.   My diet is excellent, as measured by the monthly tests that are done, NOTHING is out of whack, diet-wise.   But I still feel crappy most of the time.  (Have some good days, but mostly not).

I had great hopes when I switched to NxStage, I looked forward to feeling better (than In-Center), and having better "numbers".     

What the heck could be wrong here?   
I know there are lots of folks here who do NxStage and are ecstatic about it, and I am happy for them.   
I just want that same happy outcome.   
Any thoughts??

And how come a much lower Kt/V is considered "fine" for folks In-Center, but the bar is much higher (Kt/V-wise) for Home Hemo?   How come it isn't the same goal? 

---Dan

[cattlekid]

I'm fighting the same Kt/V issue with my center as well.  But for me, things are a little different.  My numbers are all in line except Kt/V, but I feel great. I have about one day a week when I don't feel too swell when I first get up in the morning, but that's about it. 

I wish I could give you some better advice about the Kt/V.  I meet with my neph today and we are going to discuss it.  There are studies that show that Kt/V isn't the be-all, end-all when it comes to measuring dialysis adequacy.  However, in your case, there may be something else going on.  Maybe you need a change of prescription?  What has your neph said? 

As far as the time involved, I'll agree that it is a drag to come home after a day's work and be faced with the machine.  But then I always remind myself that my life would be a lot worse if I was still giving up 4+ hours per in-center treatment, then dragging myself home afterwards.  With NxStage, I know that I can shoehorn a treatment in wherever I need to because I will be fine afterwards to go and do whatever comes next without that "downtime" that comes with an in-center treatment. 

Do you have a care partner (god, I hate that smarmy wording!) that can help with the mundane supply stuff? 

[Bill Peckham]

I know exactly what you are talking about. I switched to NxStage full time in January 2007; by the fall '07 I was feeling just as you describe. If one thing went wrong with treatment , for instance not being able to achieve a 450 Qb then I was suddenly on the machine past midnight which then left me dragging at work the next day. I typically get off work at 4:30 and I needed to get on by 7, in order to get to bed by 11. This was hard to do - all the life chores between takiing care of the dog, feeding myself, and keeping the house, it felt like a sprint every day. I was considering trying a B Braun machine, going back incenter, I even considered trying PD.

Luckily before throwing in the towel on HHD I tried nocturnal and that made all the difference. I actually had free time after work, everyday of the week, for the first time in 17 years. I started blogging. I took a different job at the same company that requires sudden over time because I knew so long as I was home by 9 I would be able to get on dialysis in time to wake up. But the big difference is I felt better. For the first time since switching to NxStage I felt as well as I did (or nearly as well) as when I was using the Aksys. For the first time since switching to NxStage I could take a day off without feeling I NEEDED to dialyze the next night.

Dannyboy can you try extended overnight dialysis?

[tyefly]

When I started Nxstage I too felt not as good as I did doing incenter.....   they had started me using 20L and running 450 blood flow speeds......  my kt/v went down compared to what I was doing in center....where I was running  three hours at blood flow speeds of 350....  I ask if I could do more L and slow my blood flow speed down..... I then started using 30 L  and running around 370... doing this 5 days a week....  after a couple of weeks I started feeling really good......  and continued with that for a year or so.....  then I ask to start doing nocturnal  still using the same 30 L  but blood flow speed was in the low 250 or so.....   after a couple of weeks doing nocturnal for 7.5 hours every other days... I felt great.....really great.....I did that for roughly a year....now that I have had a transplant  I feel great too......but I will say that I felt just as good as I do now as when I was doing nocturnal dialysis.......  so....In center  was ok ...cramped all the time and felt pretty washed out....short daily using 30L slower blood flow speeds made me feel even better..... much better.....nocturnal  made me feel like I was not sick anymore....seriously made a huge difference......

[Dannyboy]

@Cattlekid:  RE: prescription change....My Neph proposed to increase my running time if I wanted better numbers.   
Yes, I have a care giver...my dear wife.

@Bill:  Thanks for sharing your own experience.   Interesting.   Yep, you know exactly what I'm talking about.   Nocturnal is not offered right now for me, I'm told (just asked about it) "sometime this year".    Nocturnal sounds very promising.   I've heard of it, of course, just wondering how a "tossing/turning sleeper" like me could go without pinching lines, etc.??     Like you, I've considered going back to 3x a week InCenter, but onlly 'cause my memory of how much I HATED IT is fading.

@tyefly.   Wow.   You felt just as good on Nocturnal as you do now post-transplant!     So another nocturnal recommendation.  thank you.

So....how does one keep from pinching lines while sleeping??   I know about wrapping a sensor layer to alarm if a needle gets yanked out, just wondering about the other practical issues.   

Thanks so much for the advice and comments.

[Hemodoc]

@Cattlekid:  RE: prescription change....My Neph proposed to increase my running time if I wanted better numbers.   
Yes, I have a care giver...my dear wife.

@Bill:  Thanks for sharing your own experience.   Interesting.   Yep, you know exactly what I'm talking about.   Nocturnal is not offered right now for me, I'm told (just asked about it) "sometime this year".    Nocturnal sounds very promising.   I've heard of it, of course, just wondering how a "tossing/turning sleeper" like me could go without pinching lines, etc.??     Like you, I've considered going back to 3x a week InCenter, but onlly 'cause my memory of how much I HATED IT is fading.

@tyefly.   Wow.   You felt just as good on Nocturnal as you do now post-transplant!     So another nocturnal recommendation.  thank you.

So....how does one keep from pinching lines while sleeping??   I know about wrapping a sensor layer to alarm if a needle gets yanked out, just wondering about the other practical issues.   

Thanks so much for the advice and comments.

Dear Dannyboy,

If you are doing all of the work entailed with dialysis, yes, it does take time to do all that is required of home dialysis on NxStage. I likewise didn't feel well on the 20 L prescription. I had them agree to 30 L prior to starting training. When I returned the next month, I asked to go to 40L and my nephrologist to my pleasant surprise agreed.  My weekly Kt/V is over 3.0 which puts me above in-center clearances. The most important part of home dialysis is getting both the frequency and the duration.

It sounds as if you will need to explore the nocturnal route with your medical team. If they don't have experience with nocturnal, you might explore your area to see if there are centers that do nocturnal near you. Some patients travel several hours to be able to do their nocturnal treatments.  Even though I don't do nocturnal treatments, my extended dialysis of nearly 24 hours does help in feeling better.

I would strongly encourage you to consider doing what ever you need to do to find a center that will do nocturnal dialysis with you. The differences in longevity and freedom is immense.

I wish you luck, but truly don't give up on home dialysis. A lot of work, but if you can get enough dialysis, it has the potential to give you your life back.

Take care,

Peter

[rocker]

So....how does one keep from pinching lines while sleeping?? 

NxStage lines are pretty firm.  DH slept on dialysis all the time, even before we went extended, "pinching" the lines to the point of causing a pressure change was never a problem.  I often see him laying on the lines, they just don't "pinch" much. 

For alarms, well, you just train yourself to wake up if there's an alarm.  We've never missed one to the point of having a problem - and he clots fast.

He also came up with an idea for line management - he put a Command hook on his bedside lamp (it's large and heavy), then bent up a paper clip into a large hook and hung it on that.  Once he's on, I lay the lines in the U and they don't get hung up on the table edges as he moves.

The best thing I can tell you is tape tape tape.  We use 3.5 tapes per needle.  One to tape a folded 2x2 over the top of the needle next to the skin.  Then a long tape, ripped in half lengthwise.  It goes under the tube, adhesive side up, then each side is folded over about 45 degrees and stuck on top of the first tape.  Another tape on top of that, and the fourth tape tapes the tube to the skin just under the other tapes.

As for discussing this with your center, understand the politics.  The NxStage is "not FDA-approved for nocturnal."  However, there is nothing specifying the maximum length of the treatment.  So if you tell your clinic you want to explore doing "extended" treatments of "about eight hours", they don't feel as liable and may be more open to your request.

  - rocker

[Hemodoc]

So....how does one keep from pinching lines while sleeping?? 

NxStage lines are pretty firm.  DH slept on dialysis all the time, even before we went extended, "pinching" the lines to the point of causing a pressure change was never a problem.  I often see him laying on the lines, they just don't "pinch" much. 

For alarms, well, you just train yourself to wake up if there's an alarm.  We've never missed one to the point of having a problem - and he clots fast.

He also came up with an idea for line management - he put a Command hook on his bedside lamp (it's large and heavy), then bent up a paper clip into a large hook and hung it on that.  Once he's on, I lay the lines in the U and they don't get hung up on the table edges as he moves.

The best thing I can tell you is tape tape tape.  We use 3.5 tapes per needle.  One to tape a folded 2x2 over the top of the needle next to the skin.  Then a long tape, ripped in half lengthwise.  It goes under the tube, adhesive side up, then each side is folded over about 45 degrees and stuck on top of the first tape.  Another tape on top of that, and the fourth tape tapes the tube to the skin just under the other tapes.

As for discussing this with your center, understand the politics.  The NxStage is "not FDA-approved for nocturnal."  However, there is nothing specifying the maximum length of the treatment.  So if you tell your clinic you want to explore doing "extended" treatments of "about eight hours", they don't feel as liable and may be more open to your request.

  - rocker

There aren't any dialysis machines approved for nocturnal. Any physician can prescribe nocturnal dialysis if they wish. It is by no means illegal in any manner.

[tyefly]

Nocturnal is just a work to describe doing something at night...... A person could do treatments at any time of the day  ( or night )  even if its short daily......  I did short daily at night for several months too..... well it was dark  out side and I got off of the machine sometime around midnight.....   I think the goal is to feel your best with out having to spend alot of time sitting all day during productive daylight hours.....  Extended treatment is a goal I believe many should look into....the difference is how you feel is a big one..... many people just want to run fast and spend as little time as possible on the machine.....I can understand that too...and they often say they feel great.....for them thats great...but I didnt know untill I started doing extended treatments what feeling good was like.....  Big difference.....  I think do at least 24 hours a week would be a goal for me....  where a person could do 6 hours  4 days a week.....  and maybe sleep while doing it .....like maybe start at 7 or 8 at night and get off at 1 or 2 am ..... or something....  I did not have to give myself any extra heparin when I did 6 hours.....   any way....its really all about  how to make you feel the best you can while doing dialysis..... if a person can do more hours per week   and still keep a good active life and stay busy having fun and being productive that is what its all about......    When or IF    I have to do dialysis again  I will be doing it extended    No if ands or butts about it.........Never want to do in center  EVER......

[Desert Dancer]

@tyefly.   Wow.   You felt just as good on Nocturnal as you do now post-transplant!     So another nocturnal recommendation.  thank you.

So....how does one keep from pinching lines while sleeping??   I know about wrapping a sensor layer to alarm if a needle gets yanked out, just wondering about the other practical issues.   

Dannyboy, I'm on nocturnal, too. I can't recommend it highly enough. I feel absolutely fantastic... I have a completely normal life and my numbers are always fantastic (my kt/V is usually around 4.0). I'm down to three prescriptions (all of them affordable) and I have no fluid or dietary restrictions. I use a Baby K so I only have to deal with dialysis every other night, not every night. I generally dialyze between 10-12 hours per treatment.

I wouldn't worry about tossing and turning... I do, too, and I don't have any problems with my lines. I might get an alarm once a month - if that - and it's usually the position of my arm, not a kinked line. If you secure everything sufficiently you're not going to have to worry about needles coming out, either. Here's a series of pictures I posted a few months ago that shows how I secure my lines, if you're interested:

http://ihatedialysis.com/forum/index.php?topic=24989.msg402720#msg402720

[Gerald Lively]

Once again I am confused.

In center with a chest catheter I get a blood flow pressure around 400, sometimes higher.  I'm there for four hours, three days a week.  You guys are talking about pressures down as low as 200.

Do I want to give up good pressure at the enter for a home dialysis machine that performs in the 200's?

Mt fistula is not operational yet.

[amanda100wilson]

Gerald, the idea is to run at a lower speed for longer.  This gives bigger molecules chance to move from the cells to the blood.  Conventional dialysis doesn't give this time to happen, it just removes what is already in the blood and the small molecules that can get into the blood during the treatment.the other aim is to do it more often.  I do five days a week, 2-3 hours per treatment.  I am trying to work with my current nephrologist at the moment to do extended/nocturnal but if he doesn't agree then I'll go elsewhere.

[Desert Dancer]

In center with a chest catheter I get a blood flow pressure around 400, sometimes higher.  I'm there for four hours, three days a week.  You guys are talking about pressures down as low as 200.

Do I want to give up good pressure at the enter for a home dialysis machine that performs in the 200's?
Mt fistula is not operational yet.

Slower and longer is gentler and better. It's not that the machine only performs in the 200s; hell, I could set my blood flow rate to 600 if I wanted to (I don't - that would just defeat the purpose). Higher pressures are NOT something to strive for.

The only reason you have to have such a high blood flow rate in-center is BECAUSE you're only dialyzing for four hours. The lower your blood flow rate, the better it is for both your heart and your fistula (once you start using it). Dependence on high blood flow rates is one of the main reasons I chose NOT to go with the NXstage.

[Dannyboy]

Peter, tyefly, rocker, DesertDancer,
Thanks so much for your comments on Nocturnal/Extended, and how you feel so much better.    My center is considering starting an Extended program, I've began the process of asking for it.    I appreciate the practical suggestions about "pinching", etc. I asked.   DD, the pictures are great, thanks!

A Kt/V of 4.0???   Sounds great, especially since you feel great.

---Dan

[Desert Dancer]

DD, the pictures are great, thanks!

A Kt/V of 4.0???   Sounds great, especially since you feel great.

---Dan

I'm glad you liked them and I hope they're helpful to you.

Yep, the lowest my Kt/V has ever been is 3.6. My clinic loves me. I make them look good!

[Hemodoc]

Once again I am confused.

In center with a chest catheter I get a blood flow pressure around 400, sometimes higher.  I'm there for four hours, three days a week.  You guys are talking about pressures down as low as 200.

Do I want to give up good pressure at the enter for a home dialysis machine that performs in the 200's?

Mt fistula is not operational yet.

Dear Gerald, we are talking about blood flow rates (BFR) which by nature of being lower results in lower arterial and venous pressures. The Japanese especially use very low BFR as low a 200 ml/min. Europe likewise has much lower BFR. Both have much better survival than America.

One issue not explored well is the relationship of BFR and fistula complications. One of the reasons Japan has a higher Fistula rate is that lower BFR's means fistulas that would be considered inadequate in America work fine for their patients.

Patients that do nocturnal dialysis routinely have BFR between 250-300 ml/min. In this case, the middle molecule clearance increases dramatically with time on dialysis. In many ways, time on dialysis is much more important than urea clearance. America focusses on urea clearance due to acceptance of the 1981 NCDS that failed to reach a "significant" result for TIME. It came to 0.056 with the arbitrary 00.5 as the  statistical standard. Japan, Europe and Australia questioned this outcome while America embraced it and that ushered in the era of urea kinetics where high pump speeds and high ultrafiltration rates with short treatments dominated the market for decades.

http://www.hemodoc.com/2010/12/ncds-revisited-three-decades-later.html

The intriguing data from Japan is how much better their survival is and how low the BFR's are. Some speculate that the low BFR themselves may be part of the survival benefit. No conclusive data to back that up at this time but it is interesting how well Japan does with much different dialysis practices.

I hope this helps.

God bless,

Peter

[Gerald Lively]

Ah, let’s see now;  I have my BFR and Kt/V and I get this info at the RAI.  If I didn’t feel so FUC about HD, I’d report it to IHD.  Somehow my Creatinine snuck in there but I’m okay with my BP. 

[The Noob]

can't agree more with the longer slower treatment. home hemo kt/v and other labs have a different parameter that what is measured in center. dh's has been higher on HH but again, parameters are different.
the longer slower treatment is the way to go. we are at 4.5 hrs, would like to go to 5, and slower speeds, lower FF, etc. but he can't sleep during the tx and chair time is hard sometimes.
we'd need a haparin pump, or one of us have to do saline bolus every couple hours.

[Dannyboy]

Well I discussed extended/nocturnal with my Neph yesterday and (surprise to me), the Neph was very positive and supportive of my doing it, mentioning most of the advantages posted above by all of you.   

So that is good news.   Will keep you posted.

Thanks again for all of your advice and recommendations.

---Dan

[Hemodoc]

Well I discussed extended/nocturnal with my Neph yesterday and (surprise to me), the Neph was very positive and supportive of my doing it, mentioning most of the advantages posted above by all of you.   

So that is good news.   Will keep you posted.

Thanks again for all of your advice and recommendations.

---Dan

Great news Dannyboy. Learn as much as you can. There are  lot of great resources out there to learn and grow with home hemodialysis.  Good luck with the nocturnal. I believe it may be a great way to help you. Keep us informed on your progress.

[The Noob]

ask about the strength of your solution too if doing bags. he was at 45% lactate, labs good, moved to 40%.
not sure what that means, will have to do some reading, but someone here can chime in.