Fed up!

[amanda100wilson]

I am just about fed up with doing this. I am fed up with having a huge chunk taken out of my day. I am fed up with trying to juggle my like around my NxStage machine. Even if I go out, I feel guilty because I know that I've got to get back to do D. I am fed up with the enforced period of sitting still (I an naturally a fidgit and RLS makes it worse. I want to nap but I am afraid to in case my pressure drops, or I rip my needles out. I am sick of that bloody 24 alarm that goes off even if I so much as fart! I'vehad it to the point that I don't care I run the BFR at some ridiculously high setting. I just want to get off this machine quicker and have some semblance of life. I'm tired of getting the run-around from my doctors. I'd rather they just say 'no' than keep giving me the runaround. At least then I can do someting decisive and look elsewhere. My son has started his summer break from school and here I am, sitting and spending my time sitting in this darn chair!

[SugarBear]

Amanda, I'm sorry to hear you are having such a bad time.  I too did short daily hemo dialysis for about six months before I quit because my partner couldn't do it anymore.  So I have felt a lot of what you are feeling and understand the frustrations that come along with doing NxStage at home.  It help me to see the center's therapist, it was an unbiased person who can provide support to get through it. 

You have our support and love.  If there is anything we can do, like provide ideas from our personal experience, please let us know.

Nelson

[boswife]

oh Amanda, i know im not the one on D, but i am 'tied' just the same..  (i realize i get to move around, and well for me work my tush off so that when he's 'off' the machine, he's free to do what he wants)  Im exhausted and i wonder where that 'freedom' thats spoke of with NS ....is. ( Before anyone gets me wrong, i love nxStage and all, and i love that my hubby is 'home' but it's no walk in the park..)  For us too, its A LOT of time!! a whole lot.  now, yes its great that he's getting better dialysis, but!!!!!!!!!!!  well, i guess im just wanting to give you a  and hope that either extended eves, or ?? will come about for you so as you can live your life more fulfillingly...  Sorry i went on a rant of my own, just showing you your not alone in the fed up part.  We've been up and down and now, a year and a half later in this modality, and we're just......... well, it's just what we do, and we're fine, but, i surly understand your feelings..

[Sluff]

 

[jshabanian]

I just finished my second week of NXstage training and I understand where you are coming from!!  The first day they set me up I was running for 3.25 hours.  I said "how is this any better than going to the center 3 times a week for 4 hours?  This is actually MORE time spent on dialysis!!!  They blah blah blahed about better dialysis, living longer etc.  I think anyone who works with people on dialysis should have to spend a month simulating being on dialysis themselves.  They cannot possibly understand how bad it is unless the do it themselves!

We've done some adjustments to my prescription so I am now running about 2hrs 30 min which is better but by the time you add set up and tear down time I am still spending a lot more time on D than before.  I am hoping that being at home makes it more tolerable but now I am having my doubts.

I too have RLS and find the treatments to be excrutiating.  I started taking tylenol with codeine so I can tolerate the treatments.  Have you tried that?  I take 2 before the treatment and one about half way through.

Do you ever get used to cannulating yourself?  I get so nervous that I feel like I am hyperventilating.  I have done it 4 times so far.

I guess I don't have anything very encouraging to say about D.  I hate it too.  I think we just have to want to live more than anything so we can put up with the pain and bother of D.  I want to live for my kids and family but if I didn't have either I would probably not do it.

Try to keep your chin up and do some fun things on your time off.  I recently started sewing some skirts for my girls.  It takes my mind off my troubles and I also feel productive.

Good Luck,

Janet

[amanda100wilson]

Cannulating does get easier although I still use Emla. Cream  to make it less painful and also makes for easier scab removal.

[ESRD Survivor]

I can sure feel for you.  I could not do treatment tonight, my venus is giving me problems and Wed and Thur I almost gave up then too but luckily I got it to work.  I said to hubby I don't know if all this frustration and stress is worth it, then he says, but it is better than being in center.  I hated in center.  I do my treatments when hubby gets home around 6:15 and watch tv with him till my treatments are done around 9 or so, so I don't feel like its taking up all my time.

For me my RLS is gone, and I really have no depression like I did when I was in center, so it for me has been a life saver.

I wish you well, try not to give up.

[cattlekid]

Hello Amanda,

I wish I had something better to offer you than a hug and "I know where you are coming from".  The only thing that is keeping me sane while doing home hemo and working full time is the fact that I guard my Saturdays off like they are sacred.  I want one day per week where I am not working or doing dialysis.  It allows me to continue to feel like a human being instead of a hamster on a wheel.

I'm with you also on the BFR - people can judge me all they want, but I run at 450.  My buttonholes and fistula are pristine and give me no issues whatsoever (knock on wood!).  My pressures are awesome and my treatments go off without a hitch. 

The one thing I did this week that is really helping is that I changed the amount of time between system checks from 30 minutes to 60 minutes.  This way, with my 2.5 hour runs, I only get two system checks instead of four and I cut my time on the machine by 15 minutes and didn't cut my actual treatment time.  I still document my pressures every 30 minutes so my nurse won't have a hissy fit. 

I feel you on the RLS too - have you tried Requip?  I take 1 mg before bed and it really helps.  Sometimes if it gets bad during the day, I'll sneak another .5 mg before I sit down for treatment just to take the edge off.

[ESRD Survivor]

No judgments, I used to run 500 because that is what I was taught.  I now run 450.  I am having trouble with the venus, but I have had stenosis before.  I just can't sit any long than I have to.

[lmunchkin]

Amanda & all others who have to do this, Im sorry!  I wish to God no one had to go through this.  I can at least get up and walk around, while J. lays in bed.  But I do him in late evenings and once I hook him, we watch a little TV and he lays down till I take him off.  He is not sitting all the time, which I can imagine wears on the butt!

Ive changed his BFR upward some because of having to work full-time and for the most part, its been doing real well.  Mind you, he does watch what he takes in during the day and as of late, his weight has been real good to where I don't need to pull off much fluid, thus pulling of toxins.  That makes his time on the machine minimal (2.5 to 3.0).

Today, he was below his dry weight, so I ran him with no UFV & 20L DV.  His DR at 7.3pr hr., UFR at 0.15, with BFR at 380.  When he finished, his Tx time was 2.44 with a BLP of 63liters processed totally.  All this time was not to remove fluid, but removing the toxins built up.

Amanda, I wish there was something, anything I could do for you, but other than sit there with you, I couldnt really know what you & the rest go through.  Im sure it is Hellish on and for you all!

Try to lay down, instead of sitting.  Maybe that would help!  Does your husband sit with you, dear?  I think that helps pass the time somewhat.  Heck, Ive gotten up in bed with husband and set alarm, and we both go to sleep.  Him, because he is tired after the whole day and me, because of work. I actually can't wait to get him hooked, taped real good then crawl up in bed with him to rest my eyes.

Hang in there my friend, you are tough and Ive known that about you.  You are an inspiration to me.  I do not know how any of you do it on your own.  It is simply Amazing!

God Bless,
lmunchkin

[cdwbrooklyn]

Hello Amanda,
I’ve been on D for 13 years.  In center for 11 years and on Nxstage for 1 ½ years and found that I benefit from home D.  At first I was feeling like you.  I’ve remembered telling my nurse that I don’t think I can do this.  It’s taking up all my time and I don’t have any time for myself.  At least in center I had four days off so I really planned my life around my days off.  My nurse said to me, “The machine is there to work for you not you work for the machine.   So make your own schedule and do it when you are ready to do it as long as you do it.  Do not rush home from work to get on the machine…etc” After her encouraging me, I decided to continue to do it at home.  So I’ve changed the way I felt about the machine and took it one day at a time.

I do not rush to get on the machine anymore.  I take my time and do what I need to do before I get started. However, I do start the machine as soon as I reach the house and leave it on “23” until I’m ready to snap and tap. This had become a routine for me.  I started on six days a week.  My results were so good, my nurse put me on 5 days a week with my doctor’s approval and my results are still good.  My routine is off on Monday, treatment on Tuesday, Wednesday, and Thursday, at 9 or 10pm.  Off on Friday, treatment on Saturday and Sunday at 6 or 7am, some Sundays I do it at 9 or 10pm if I don’t do it in the morning.  However, I found that I still have my weekends to enjoy and I only do it after work for three days.  I run 2 ½ -3 hours each treatment.   

Yes sometimes I feel like giving up but I have so much to live for.  I’ve learned to take it one day at a time and don’t think too much ahead because you will get depressed and want to give up.  I just think about it when I reach the house and about to get on.   After I am done, I don’t think about it again until the next time I have to get on.  I find that this method allows me to stay level headed and enjoy life.  Also, I found that using bags make me depressed because it requires most work.  However, the pure flow works better and it’s less work and gives me more time to do some things around the house before I put myself on.  Also, it helps if you try to have positive thoughts.  This is not what we want in our life but this are the cards that were dealt to us.   You can play the game to win or you can throw the cards in the air and give up.  Pick a schedule that will fix your needs.  I found that doing it early in the morning (6-9) give me the rest of the day to myself or doing it late at night (9-12) gives me the daytime to myself. 

Also, I put myself on and take myself off so I don’t have to wait for anyone.  Doing it myself helps me to stay in
control of my treatment and enjoy life better as I don’t have to be on someone else’s schedule. 
You will get the hang of it.  You can split up the treatment days by doing it every three days and taking off one day, or doing it for two days, take off one day, do it for four days and take off one day.  Just don’t take off two days back to back.

Hope this helps!
OneLove!!!
 

[Dannyboy]

Amanda,
 


---Dan