should i

[jonn r]

hey all....so at dialysis today the Dr. asked me if i wanted to do nxstage......so i know nothing  about it...so if people can fill me in that would rock...do i still use my fistula or do i need a cath like pd.....is it really better then going to hemo?...so as you can see i a dumb to this way and any and all info i would like....THE GOOD AND THE BAD......

thanks
jonn

ps .....we have had 54 inches of snow up here in maine in the past 2.5 weeks.....wooohooo

[Sluff]

I'm not familiar with dialysis as I'am predialysis but everyone that I know that switched to Nxstage has loved it.

[goofynina]

John, from what i hear from other members, they are much happier and feel much better being on NxStage, i am on PD and i know i feel much better too.  Yes, you do use your fistula, they will start you some buttonholes that you will eventually learn to cannulate yourself.  I dont know all the technical terms for NxStage, i just know that Epoman swore by it and others seem to love it too.     And, you wouldnt have to drive to and from anymore (especially in all that snow) that is a definet plus.  Good luck in all you do my friend, and remember to Please keep us posted 

[jonn r]

the problem that i have is that i have buttonholes now ....but they seem to close everytime i am done....so what i am trying to say is that it still hurts for every dialysis that i do.....so i dont think i could do the nxstage because i cant stick my self....hmmmmmm

[Black]

the problem that i have is that i have buttonholes now ....but they seem to close everytime i am done....so what i am trying to say is that it still hurts for every dialysis that i do.....so i don't think i could do the nxstage because i cant stick my self....hmmmmmm

Mike's buttonholes also seem quite hard to stick, but they are still improving.  He said it still hurts too much for him to do it, so I do it for him.  (Most NxStage dialyzors have a partner who trains with them.)  Please don't let that stop you from trying to get a NxStage machine.  The NxStage has absolutely been the very best thing to happen to Mike since his kidneys started to fail.  (Well, with the possible exception of the wonderful non-profit center where we trained.)  Check out www.ilovenxstage.com and do a search on this site for "nxstage", and read the good and the bad for yourself.  (You are going to LOVE the NxStage and how good it makes you feel!)

[Bill Peckham]

the problem that i have is that i have buttonholes now ....but they seem to close everytime i am done....so what i am trying to say is that it still hurts for every dialysis that i do.....so i dont think i could do the nxstage because i cant stick my self....hmmmmmm

One thing ... the buttonholes might work better if you are using them nearly every day.

Some of the concerns I've heard from people about the NxStage is the amount of supplies and the amount of time it takes to complete a treatment. I've heard from people who were told that it would be a two hour process which I think is over selling the System One. Generally people have seen longer treatments and you have to add in the set up time. That said in my book it still is better than incenter dialysis. But it can feel like an endless grind.

With all that snow I would have to think it would be nice to avoid the drive to the unit three times a week. By dialyzing at home you are still with your family the whole time so that can make dialysis seem like less of a burden. Most importantly you should feel better dialyzing five or six days a week - clinically better and mentally better.

[Black]

the problem that i have is that i have buttonholes now ....but they seem to close everytime i am done....so what i am trying to say is that it still hurts for every dialysis that i do.....so i dint think i could do the nxstage because i cant stick my self....hmmmmmm

One thing ... the buttonholes might work better if you are using them nearly every day.

Some of the concerns I've heard from people about the NxStage is the amount of supplies and the amount of time it takes to complete a treatment. I've heard from people who were told that it would be a two hour process which I think is over selling the System One. Generally people have seen longer treatments and you have to add in the set up time. That said in my book it still is better than incenter dialysis. But it can feel like an endless grind.

With all that snow I would have to think it would be nice to avoid the drive to the unit three times a week. By dialyzing at home you are still with your family the whole time so that can make dialysis seem like less of a burden. Most importantly you should feel better dialyzing five or six days a week - clinically better and mentally better.

Bill is right about the buttonholes doing better when you use them more often -- they should have told you that!  Most of Mike's tough sticks are after his day off.  He said it almost isn't worth it as he usually just sits and watches TV on his night off too. 

IMO, the only people who could do the whole thing in two hours, including set-up time, would be someone under 100 pounds or with residual kidney function.  Mike weighs about 270 pounds so his actual run is about 3 hours.  By the time we add set-up and clot times, etc.,  it eats up more than 3 1/2 hours.  If he could lose the excess 70 pounds he'd be able to cut his time significantly.  (Since almost everyone in his extended family is morbidly obese by the time they are 40 that is not likely to happen.)

After being on home dialysis I can't imagine what it would be like to add on the time it takes to get ready to leave the house, make the drive, do the longer time on the machine, the longer recovery time, the drive back home and additional recovery time at home, and especially the lack of control.  UGH!!  The minor sacrifices we make (like losing most of our walk-in closet to NxStage storage) to keep Mike dialyzing at home, are well worth all of the advantages!!

[jbeany]

I'm a home body at heart, so my NxStage has been wonderful for me.  I hated the hour drive to the center, and the drive home when I felt crappy was even worse.  I didn't think I'd learn to cannulate myself either, but I can do it, even one handed.  I think it hurts less when I do it myself, actually.  I'm never going to like doing it, but it beats having a different nurse doing it every time I get in-center.  I also feel sooooooo much better.  The more often you do dialysis, the less likely you are to have that "washed out" crappy feeling.  I have more energy on home dialysis than I have had in years.  Yes, it takes up a lot of time at home, but it's still time at home.  I can call anyone I want to chat, my friends come over and see me while I'm hooked up and we visit, I do crafts like sculpting while I'm hooked up.  The room is the temperature I want it to be, not the one that the nurses are comfortable at.  (I actually have a little ceramic heater right next to me, and an electric throw for my lap - I'm never cold now!) It's quiet when I want it quiet, or I can blast music or the tv at the volume I prefer without headphones.  I haven't had a single cold this winter, since I'm not in-center sharing everyone's germs.  Almost everyone has much lower potassium when they start on NxStage - mine's so low we are actually switching to dialysate with a higher level to keep it from dropping too much.  That means no restrictions on oj, potatoes, tomatoes, etc.  The fluid comes off more often, so the fluid restrictions aren't as severe.

If you would prefer to take responsibility for your treatments, if you don't like that out-of-control feeling that waiting for the nurses gives you, then Nxstage is perfect for you.  You will have to be responsible for inventory, ordering, and receiving your shipments.  You have to keep track of when to do labs and water and dialysate testing.  Your health care is up to you.  Personally, I don't mind doing any of it - I was always very involved in what was going on when I was in-center. 

Can you picture being able to sit your daughter on your lap in your own house and read her a story while you dialyze?  It's possible with a NxStage.

[kitkatz]

I am sooo jealous of that scene.  I want NX stage and cannot get training.  Sigh!

[boclark54]

My husband's been on Nxstage a couple of months and loves it. In center is same person always putting in your needles? Are they using the blunt buttonhole needles or regular sharps? Buttonholes won't form right unless its same person since each would be putting in same spot but going at different angles. Took us a good while after we got home and settled to be able to use blunt needles and after every day did get easier to needle.

[mark j]

I've been doing nxstage at home for 1 year now, and I love it!  Not only do I feel better, more energy, better labs, but it fits into my schedule( in fact, I'm doing a treatment now  7:45 Christmas morning.)  And i dont miss those 1 hour drives to the dialysis center durring the winter months.  The training is complete, dont worry about your buttonholes, they are easier to cannulate when you do treatments 6 days a week.  My treatment time is approx. 3.5 hours and with set up its 4 hours, but still I feel its the best modality for me!

[Black]

I am sooo jealous of that scene.  I want NX stage and cannot get training.  Sigh!

Have you talked to anyone at NxStage?

[cev]

My husband has been on NxStage for ~2 years.  His labs are good and he feels better than when he was going to the in-center.  We do 3 days on 1 day off (sometimes we juggle the days for an event we want to attend).  The rollercoaster ride of 3 days dialysis a week will go away and life will be better.  There is a big time commitment.  I plan 4 hours each day he is on, this is from setup to finish cleaning up. We do his dialysis when I get home from work, it is nice that you can dialyze on your schedule.   He is on the machine ~21/2 hrs.  And there are a lot of supplies to store, we are still using bags instead of the pureflow. I would highly recommend having a partner, I stick him (button holes are a must), take care of alarms, setup, cleanup, do everything except be dialyzed.  I give him his procrit 2X week.  If we have problems and can not dialyze then he will go to the in-center.  Also if he needs Iron he goes to the in-center.  We are lucky that our dialysis center is within the medical center where his Neph is, so all is well coordinated, and they work with us. 
The good - you will feel better, be on your own schedule
The bad - time commitment, supply storage

[goofynina]

Wow, these replies make me feel comforted, i mean, once i can no longer do PD, i really am interested in trying out this NxStage, so thank you everyone for helping ease my mind, i have been worried about my Peritoneum giving out and going back to the clinic but now i think i can rest a little more knowing that the option of NxStage is there (and i have all of you to help if i have questions)    

[del]

We don't use NX stage we use a fresinius machine for nocturnal dialysis. it is wonderful to be able to do it at home and not have to drive to a center.  With more dialysis you fel so much better. Doing dialysis at home makes you more in control and we like that!!!

[petey]

Switching to NxStage and home hemo was the best thing my husband (Marvin) has done in the 13 years he's been on dialysis.  I agree with all the comments here -- Marvin felt better after ONE WEEK of training!  After one month, his lab work is perfect, and his neph took him off all bp meds and dropped his EPO dosage.  The NxStage machine doesn't "suck him dry" like in-center machines did.  Instead of the rollercoaster of in-center hemo (bad the night before, washed out after treatment, okay the next day, then the whole cycle over again), Marvin feels good every day!  We like having control over his health, his treatment, his body.

We use the buttonhole technique.  They wanted him to learn to cannulate himself, but that's never going to happen (he still won't even look after all these years when it's stick time).  I'm the sticker!  The buttonholes get easier to use each time.  The only time I have any trouble with them is after his one day off every week; sometimes I have to dig a little and sometimes I end up putting in a sharp needle.  However, most days, it's blunt needles and they go right in.  His neph told me when we were training that I would become an expert at Marvin's buttonholes, and he was right!

While he's on, he can do anything -- anything in his chair, that is.  He can visit with friends/family, talk on the phone, snack a little, anything he wants.  I put him on "phone detail" while he's running, and he has to answer all phone calls!  He loves that, and so do I.

When we found out we were going to start training, we made plans for our own "clinic."  We emptied an extra bedroom of all bedroom-type furniture and set it up like a mini-clinic.  We have cabinets and shelves for supplies (along with the closet).  Marvin built a counter (shelves under for storage and a formica top for work space); this is where we keep his mini fridge (for blood and EPO) and his centrifuge.  The counter has drawers, too, and they're labeled on the outside (gauze, tape, needles, etc.).  We have charts on the wall (a list of common alarms on one -- a shortcut to the whole process, the S.I.M.P.L.E. method on one -- and a "lab process" chart on another).  I have a tall, rolling table for my work area.  Marvin has a recliner and a tv in there, too.  On the side of his Pureflow machine, Marvin mounted a phone and his back scratcher.

There are A LOT of supplies.  Be organized!!!  It does take time -- Marvin sets up his machine while I'm at work.  When I get home, he's ready to go on.  I stick and he starts running (running on the machine, I mean).  His treatments usually last about 2 1/2 to 3 hours.  While he's holding the site (bleed time), I break down and clean the machine.  All total, it's probably 3 1/2 to 4 hours a day.  It's worth every minute of it!

The only mistake we've made on home hemo is that we didn't start it 13 years ago!

[MelissaJean]

There are A LOT of supplies.  Be organized!!! 

I am considering switching from PD to NxStage and was wondering if there are as many supplies as PD (does anyone know)?   Do the supplies have to be in the same room as you dialyze?  Thanks!

[goofynina]

Hi MelissaJean    Just out of curiosity, may i ask why you are thinking of switching?   

[MelissaJean]

Well I have an infection, so they have to pull the catheter and wondering if I should stay on hemo and do NxStage or go back to PD.

[Bill Peckham]

There are A LOT of supplies.  Be organized!!! 

I am considering switching from PD to NxStage and was wondering if there are as many supplies as PD (does anyone know)?   Do the supplies have to be in the same room as you dialyze?  Thanks!

It depends on if you'd use the PureFlow or bags and how many liters of dialysate you'd use for a treatment. Here is a picture of 600 liters of dialysate (60 boxes) and 30 cartridges. This would be enough supplies to do thirty 30 liter treatments. http://www.billpeckham.com/photos/dialysis_photo_archive/p6090006.html

Number of boxes to make six hundred liters of dialysate with the PureFlow? 5 boxes. Which would fit in the space of about six dialysate boxes.
The supplies do not have to be in the same room as your dialysis so long as you have the things you need handy - extra saline, drain line, etc.

[cev]

Hi MelissaJean
We (my husband) did PD for awhile, There were a lot more boxes then with the NxStage.  We use the bags (I am still leery of the pureflow) and have about 60 boxes delivered each month.  I don't know what the supplies are with the pureflow.  You will feel better with NxStage and daily dialysis.   If you do pureflow make sure you have a heater for the times you need to use the bags .