G Ma will try NxStage

[G-Ma]

today at training was a "bit" better....I almost crashed again...took no fluid off but machine is so efficient it pulled some..half a kilo..enough to start a headache and the almost pass out bit with washed out feeling...so need to tweak tomorrow again...I am SO OOO ready to sleep in on Saturday.  Anyone else have suggestions about the pull issue??? Do you have to fudge the fluid amt?

[flip]

G-Ma, half a kilo shouldn't make you almost crash. I've pulled as much as 5 kilos and walked out smiling. Maybe your flow is too high or something else is off. It scares me that you are going to do a solo act if you crash that easily. Maybe one of the other NxStage users can help.

[Meinuk]

G-ma - It sounds like there may have been a setting off, I've never had the machine take off fluid without being programmed to.  During your training, as you get familiar with the machine, it will be less daunting.  I posted every day of my training here http://ihatedialysis.com/forum/index.php?topic=5229.0  I call it the good, the bad and the bloody.

I hope that each day is smoother.

Best,

Anna

[G-Ma]

thanks flip and meinuk...I will be reading tomorrow evening....and no matter what or where the machine is that I am on my body crashes within a fraction of my dry weight....beat my sensitive body with a fluid stick...   generally...I am fine, feel ok, do standing bp etc...leave and about 1/2 hr away a headache starts and 1/2 hr after that the passing out begins...I had a few months vacation from this feeling but it is back....but today I do think there was a diff of opinion between the trainer from NXStage and my trainer nurse......I am learning with a new Davita/NxStage trainer...she has been with Davita a long time but just started with the home hemo unit..appears to be very good and caring...is great with cannulation..will be a good teacher for that..was a nocturnal manager.  There appears to be a certain way..I have no clue...to trick the NxS to think you want to pull or else you will get an alarm...those of you on NxS I'm sure know this backward and forward...hopefully some day I will too.....

[jbeany]

The machine wants enough fluid pull to offset the rinseback.  When I have to run without fluid pull, I just set it to .3, and then shut it off after I've started running.

The NxStage does seem to pull fluid at a higher level than it is set for.  I generally end up several 10ths under what I set it to pull, and that's in addition to drinking a full cup of ice water every time I'm on the machine.

[flip]

I always hook straight up. That means I get saline as soon as the blood starts flowing. If you're close to dry weight when you start, the initial blood pull can cause dehydration and make you crash.

[G-Ma]

First week is ""down the tubes""", I slept in and have been crying since.........not a good day....feeling let down and lonesome...my """"friend""" called and while we were talking said "Oh, I forgot you are on dialysis, you always sound so good",. and we talk 3 or more times a day...now, today I hate him too.  This is the same reason I don't talk to my sisters and brother.....they don't """remember""" my life.  No crash yesterday but we upped my dry weight 1/2 a k and ran 450 for 2 hrs 12 min...it's unreal how that machine changes the times depending on all the other factors..this I like, and it pulls excess fluid immediately and then just cleans blood the last hour.

[jbeany]

 
You can also adjust the UF so that it is spread over the 2 hour run.  The lower rate makes you less prone to crashing.  If I have .8 to take off, I set the UF pull to .4/hr - it's a lot gentler on the system that way.

[G-Ma]

thank you so much JB..that is what I will check out.  I wonder if that is what is making me so emotionally tired...all this is new to the system and running differently etc? 

[G-Ma]

  Today is a good day...first one in ages that I have not been hungry all the time, a little tired but not that exhaustion..I have purposely not had a lot of fluid just to try different things with this.......I notice I'm not going across the desert thirsty all the time now and NxStage trainer said it's because the dialysate is lactade based instead of the soda based which is so salty as well, so they shove salt in and wonder why we drink...duh..........my oldest son has so adopted NxStage that I think he talks it in his sleep...he was with me the first day and set up PureFlow and made a batch, took the books home and memorized them...anyone within hearing range of him now knows how to set up PureFlow and the cycler...all his drivers know..and he is training his brother when the equip comes home...and he wants to go back for setup and takedown so he can do that...so remember when I thought I didn't have anyone to train with me,,,I was wrong as all the kids have taken this to heart and have decided WE will do this and it WILL work.  Thank you to my family and the online family. 

[monrein]

I'm so glad you had a good day G-ma.  Your kids sound so nice, caring and supportive.  Wanting to know everything about the machine is such thoughtful and practical support that it makes my heart sing.  It also means that when you talk to them about stuff you're going through they'll have a clue and you can have a real conversation.

[G-Ma]

  well...crashed and burned today...an hour after I got home from NXStage a migraine, cramping, nausea etc...crawled into bed, just got up...do I have to do this tomorrow again......grrrrr.....everything seemed to go well and I felt fine...I think their little floor scale is messed up and I only had 1.4k to pull...I don't know...my oldest son ""stopped by"" and took his pureflow test and set up two packs and passed with flying colors...he has memorized those books...next week he wants to do the setup and takedown and probably wants to learn to cannulate me too. I think he has another career coming.  How about building a truck with its own dialysis unit?  I did tell him to work on inventing an iv pole for short people like me, one that is hydraulic and I can step on a pedal and raise and lower it.  Could happen.

[willieandwinnie]

G-Ma, if you can, invest in a good medical scale. We had horrible problems with the centers scales and once we got ours, we never used theirs again. I think it costs $300 but it was well worth it in the end. Hope tomorrow goes better for you and give your son a hug from me. Good for him. 

[G-Ma]

I will give him a hug...if he ever posts, he is TowDaddy.  He is a member and reads everything he can about NxStage, hopefully someday he will make himself known to alll the great people.  I talk about IHD all the time. 

[lola]

G-ma so glad your trying Nxstage. It is soooo overwhelming at 1st take it from the "newbies". I don't get why your crashing though, Otto only has crashed once since being on Nxstage and that's because you tried to pull to much fluid on a Monday. In center he crashed every time.

[G-Ma]

I had 5 months of absolutely no crashes so "almost" forgot them, boy what a wakeup call.   

[G-Ma]

It's slowly getting better? Headache still but nurse thinks I'm DE Hydrated.  How funny since I had to watch fluid intake before and now I'm not drinking enough, not thirsty on NXStage.  So, tonight I'm drinking...not the good stuff tho...my daughter in law cannulated me today.  She was so worried about hurting me that finally I said, just pretend you are really p_ _ _ _ _ at me, she laughed and went to work.  Her only problem being my fistula was deep, rolled and not pumping hard today but she did great, set up, take down and all.  But still too much Heparin so arterial site went into gusher mode after pulling.  I gave myself my EPO today which was easy.  BTW...NxStage regional trainer said had never been told about IHD so has checked us out and really liked what she saw, so hopefully she will help spread the word.  She agrees that it is sometimes more effective for us to give each other information and help.   Tonight I'm trying to figure out """where""" I will put all the boxes.  Now I'm starting to look forward to NOT having to leave the house every other day for an appointment I really hate going to.   

[petey]

G-Ma,
You're doing great!!!  And you have so much help from the kids and their spouses -- that makes you lucky.  Hang in there, chick!  This will work for you -- I just know it.

Yes, you really CAN drink more on NxStage -- Marvin's finally understanding that (after 13 months on home hemo!).  I think you'll find that with time you will know exactly how much to take off, how everything right (and everything wrong) feels, and what's the best thing for you to do with each treatment (though you'll probably never figure out where to put all the boxes -- can't help there because we still don't know!!!!  ).  I'm proud of you!  Keep it up!

[pelagia]

It sounds so challenging and yet you are doing it.  Hope it gets easier soon. 

[G-Ma]

Oh thanks petey...I really needed to know that tidbit...my d in law told me today that I may need to use my sewing room as a closet......grrrr icon really needed here....I have been looking forward to using that sewing room for sewing when I feel better but guess need to share it now with NXStage.  How is school going?  I think you have probably started back huh?
Ann

[G-Ma]

Thanks pelagia...yes, more challanging than I ever thought and thank God for my family stepping up like they have.

[flip]

I'm glad it's going better, G-Ma. I'm putting NxStage on the back burner for a while. I didn't like a lot of the stuff the local Davita trainer told me.

[G-Ma]

like what flip??? remember they told me circles of stuff too....

[flip]

I'm sure it's local rules......need a partner, can't remove over 1 kilo per session, can't turn off UF easily if you cramp, no buttonholes, 6 days mandatory, low dialysate flow, only 140 dialyzer available, no heparin pump so 2-2.5 hours is the maximum treatment.

[monrein]

Keep it up G-Ma.  You're really going to enjoy not leaving the house to dialyse and no waiting.