Be honest....

[MooseMom]

I'm sure you all know that there is all kinds of debate about whether or not more frequent dialysis is really better.  Most nephs look at statistics and numbers, but we know that they don't tell the whole story.  So I ask you, do you really feel better with more dialysis?

Thank you.

[jbeany]

Yes, yes and yes!  I felt better within the first 3 days of NxStage training, and I attribute that to it being done 3 days in a row.  I had more energy, no metal mouth so food tasted better and could even drink more, so the thirst was much less of an issue.

[Desert Dancer]

I did a month in-center and felt like stir-fried shit.

I did six weeks of short daily and felt marginally better than stir-fried shit.

I've been on nocturnal for a not quite a year now and have my life back. I'm back to dancing 6-8 hours a week, I've been able to drop three of my medications, I eat and drink what I want. Life is utterly normal. If I didn't have to actually DO dialysis, I might be able to convince myself I'm NOT on dialysis.

Maybe you just have to see it to believe it. See you in four days! 

[tyefly]

Incenter.....  feel like sh..t

short daily ..... feel somewhat better....but still tired... food still taste somewhat good...

nocturnal six days a week..... feel not sick anymore and that can make you believe you don't need dialysis....all foods taste good ....no problems with Potassium or phos...can eat anything for the most part...still watch salt

nocturnal everyother day...... still feel not sick anymore but you cant afford to skip more than two days or you have a hangover.....Food still taste too good and no diet restrictions... still watch salt

   I felt the best on nocturnal  either six days a week or everyother day to me didn't seem to make a difference....
In center  to  short daily..... I really didn't feel that good doing short daily.. the big jump was going to nocturnal....

you will have to start out in center  but you should go to short daily as soon as you can.... I had them develop my buttonholes in center before I went to Nxstage....  I used the same buttonholes the whole time..... then start working on doing longer slower dialysis... Extended... it doesn't matter what time of the day you do dialysis...so keep that in mind if your center is not willing to let you do the nocturnal stuff.... I believe there are ways to get around the so called nocturnal title.......short daily may be 2.5 hrs to 4 hrs..... start asking about 5 hours and 6 hours....the hours can be extended due to high pressures problems.... you want to keep you pressures down and run slow...this will help you with your potassium and phos removal.... during short daily I wanted to run pressure no higher than 200..... so I would insist that my blood speed be what ever that would give me those pressures.... I wanted to protect my fistula..... The clinic could not argue with that and my doctor supported lower pressures...  when I ran nocturnal/extended  My pressures were 120 to 150..... at blood flow speed of 300... I ran for 7 hours....  so if you can push your extended goal out to 6 hours and keep your pressures at or below 180 or less than you will be able to get those hours and receive slow dialysis and you will have time to sleep..no matter what time of day or night..... Be prepared to be creative...unless your clinic is very supportive in your goal.......my KT/v ran 3.5 or higher all the time....you cant nor can the clinic complain about those clearances....  when I was doing short daily  my kt/v was around 2.5..... IN center  my kt/v was 1.6 to 2.0
   I serious believe in longer slower dialysis.....  and I like to spend my time sleeping while doing so.... the only real problem that I had doing longer slower dialysis is that I felt way too good....like I was not sick any more....this can trick your brain in to believing that maybe you don't need dialysis....maybe you are not sick any more...... but this will go away if you skip too many days....it reminds you pretty fast....so if you keep up your dialysis you will not feel sick and you will have your life back..... and feel like doing things like before you were sick....  I love energy and I had all the energy I needed while on extended dialysis.......  Ok  enough said.......LOL

       

[MooseMom]

DD, I do believe it, but that's just based on common sense, not real experience.  So, I thought I'd consult the font of all knowledge...IHD.  Oh, that's right!  You'll be coming to Vegas after all!  Prepare to be interrogated!

jbeany and tyefly, thanks for that.  I'm prepared to do what it takes to feel my best on dialysis; I am not feeling particularly brilliant these days, so if I can feel better than I do now, then I'll be grateful.  I think my clinic will support me.  I'm pretty sure my neph will; I've been seeing him for 7 years now, and he knows how driven I can be.

[monrein]

Absolutely YES. 

[del]

Nocturnal dialysis is the BEST!!!  Hubby feels better than he has in years.  He has often said that except for having to hook up to dialysis he feels no different than he always has (before his kidneys failed).  His appetite is unbelievable.  He eats 3 or 4 times as much as me!!!  I can gain weight just watching him!!

[texasstyle]

I keep hearing good things about it

[brandywine]

Well, of course, I'm doing PD, but I can't imagine going three days without. Just the fluid retention alone will destroy me. My ankles are cankles every night. I can't imagine starting the day out with those bloated things. I would never want to do in-center.

[MooseMom]

Well, of course, I'm doing PD, but I can't imagine going three days without. Just the fluid retention alone will destroy me. My ankles are cankles every night. I can't imagine starting the day out with those bloated things. I would never want to do in-center.

Well, PD gives you more frequent dialysis just like NxStage, so your answer is just as pertinent.  Thanks for that.

[mcclane]

i'm not doing nxstage, but I have been given a 'fridge' sized dialysis machine for home use, and i do dialysis 7 days a week (mostly nights).  for the most part, i do feel pretty good.

[MooseMom]

i'm not doing nxstage, but I have been given a 'fridge' sized dialysis machine for home use, and i do dialysis 7 days a week (mostly nights).  for the most part, i do feel pretty good.

Apologies; I guess when I say "NxStage", I mean frequent dialysis at home, no matter what the machine.  So I'm glad to hear you say that you feel pretty good.  That's great!  Good for you!

[mcclane]

i'm not doing nxstage, but I have been given a 'fridge' sized dialysis machine for home use, and i do dialysis 7 days a week (mostly nights).  for the most part, i do feel pretty good.

Apologies; I guess when I say "NxStage", I mean frequent dialysis at home, no matter what the machine.  So I'm glad to hear you say that you feel pretty good.  That's great!  Good for you!

just a cavaet, if I crank up the UF and shorten the treatment time, I feel like crap.  But if the UF is reasonable (around 2 - 2.5 kg) and the treatment time is 7-7.5 hours, I do feel pretty good.  I use the 'hunger' method to determine how well I feel.  If after dialysis I am starving, then it was a good dialysis run 

[MooseMom]

I like your "hunger method".  It makes sense, really.  If you are feeling unwell after a run, chances are you won't feel like eating.  Very clever!

[Dannyboy]

Hi MM,
Since I made the switch from 3X a week in-center to 5 X a week NxStage, I absolutely feel better, have more energy, and friends/family say "I look better"...which I take to mean I looked like crap previously.
---Dan
PS: RE: pic thread from Vegas...I thought MM was er, much older, etc. too LOL.

[MooseMom]

Hi MM,
Since I made the switch from 3X a week in-center to 5 X a week NxStage, I absolutely feel better, have more energy, and friends/family say "I look better"...which I take to mean I looked like crap previously.
---Dan
PS: RE: pic thread from Vegas...I thought MM was er, much older, etc. too LOL.

So, everyone thought you looked like crap and that I was old.  That's just great.