I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: ESRD Survivor on April 10, 2012, 03:03:43 PM
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So we have been home on our own for 5 weeks now and I just get so stressed doing this! So much so I was having chest pains and had all sorts of fun tests done to make sure it wasn't something else. I had such a hard time with the needle sticks and while I do good with them I can't seem to feel confident. I stress that I am going to alarm. Last night, alarm 11 (no air) then red alarm 24 on and off for an hour, my arterial kept going to 300 and even 400 we would fix it, then 10 min later...alarm...finally it calmed down after an hour and I said to hubby, I don't know if I can do this day in and day out. I know I don't want to go in center. I fret about the snap and tap, I must do it 10 times because I always see air.
Someone help me!!! lol
Side question, I know you can get to 23 on the machine and turn it off, is it ok/safe to do that overnight? I am thinking of doing that on vacation, setting up before bed, then hooking up in am.
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Hubby is the patient in our relationship and we are home for about six weeks now. It's still stressful but getting better. Our training nurse said it's a minimum of six months before you feel comfortable.
The first three weeks were absolutely brutal, I literally felt on the verge of tears most of the time, all day, every day.
So no advice, hopefully some of the more experienced members will chime in but hang in there. You're getting a lot better dialysis than three times a week in centre, so it's worth it, I think.
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You will see micro-bubbles in the line most of the time no matter how well you snap and tap. As long as there is not any big bubbles or gaps in the fluid you will be fine. God Bless, Bill
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oh boy, i was the queen of fears or what ever name you'ld want to put on it. My chest hurt so bad ALL day and i truly felt it was the end of me. I was taking stuff to spray on toung to calm me down, rescue remedy, and even resorted to zanix (and im a pill phobe) as well as prayed day and night and i couldnt rid myself of the *pain* (im the wife of patient and his partner/DOOER in this nxStage business) I hate to say that it took me a good 5 months before i noticed that i was getting through it all w/o ALL day pain, and only fleeting pain. That may not be too encouraging, but i can honestly say that im so glad we made it because it's really not the huge undertaking i made it out to be. I couldnt even look at the machine w/o crying. It was sad. What was worse, is the actual doing of it wasnt my problem, that part becomes 'just what ya do', but the responsibility and worries were just behond what my poor ole bod could handle. Well, were ALL good now and though i took longer than most (well probably EVERYBODY..lol) to settle down, i am settled and theres no doubt you will too. You've just got to trust the machine as it will NOT let you get hurt.. Tech support was my best friend and i kind of miss them..hehe
also.......... if you let the machine set for a bit at the 23 (i like to let it for an hour at least) you'll find snap and tap is much nicer, and yes, turning off at the 23 is safe. funny, i did it again today and was going to write down exactly what happens when you turn it back on but i think it goes like this,, the 4 and 7 show back up, then i think the 40 alarm, you hit treatment and it counts down about 2 min, and goes back to the 23. Theres a demonstration on the internet of it but i dont know if i can find it. mabie even just google,,,, stoping nxstage at the 23 and you'll feel more confident about it.. All the best to you, and hope i didnt make ya feel more scared that you have that long ole stretch of fear too before you overcome it. I have anxiety dx and thats just part of my own issue in life :'( Just know that it WILL pass! Your gonna love it once it does :cuddle;
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hello,
my husband and started at home about a month ago and while at first I too was very overwhelmed, we have settled into it and it does get easier. There are of course better days than others and sometimes, the fistula just doesn't want to cooperate, so it takes us longer to go up on the pump rate. But all in all, it gets better. And I know that from everything I read it is much better at home since you dialyzes more often and it's easier on your body with better outcomes all around.
Hang in there.
My husband actually sets everything up, so just check his lines, make sure things look correct so we have two sets of eyes on everything. We are both patient with eachother and take our time and have everything laid out so it makes it as easy as possible.
Good luck. You're not alone out there.