Starting NxStage training!!!

[big777bill]

 I got the word from my neph that our NxStage training will begin on March 5, 2012. I'll be able to put the days of in center behind me! No more waiting for a chair.  No more staring at the clock wishing it would pick up it's pace. Hopefully no more feeling totally drained after treatment. Happy Days!!






EDITED: Moved to NX-stage Users area- kitkatz, Moderator

[cassandra]

Wow congratulations BB I hope all those wishes will come true for you.

love Cas

[big777bill]

  I'm nervous about starting training but I know it will be a better modality for me in the long run.

[SteveK87]

I'm nervous about starting training but I know it will be a better modality for me in the long run.

Congrats!  My wife says it is like night and day between in center and home D.

[rocker]

  Congrats!

You'll find many home hemo boosters here....

  - rocker

[boswife]

im so excited for you Bill!    I really am.  It's quite an amazing thing you'll be doing and im so happy to see ya *home*    Wishing you both the best and hopful that you'll keep us updated.  I dont want to put any downers on ya,(cause really, there isnt any)  but just so it's no supprise (it was to me) there is a lot of stuff you'll not only be learning, but be responsible for.  I wish i had known of the ordering, blood draws etc ... ahead, as i felt that they just kept 'springing' stuff on me and got my head wherling, where it didnt need to.   It is sooooooooooo do-able and i even kinda like it now    But a lot of stuff came as a real surprise to me.  All the best,,, it's a GREAT little machine...  WE're soooooooo verry happy with it
and   Bless ya and keep the faith    it's all good 

[big777bill]

 

[lmunchkin]

Like BW said, it will be a little overwhelming at first and lets face it, it is a lot to learn. But if you are like us & committed, you will be just great.  Stick with it and in the end, you will be so glad you did.  It is well worth the effort.

The taking blood for labs, the testing of water & dialysate were the hardest things for me to organize.  Trust me, you will get frustrated with it all cause it is so much.  But once you start to see how it all works together for your good, you will be able to do it blindfolded.  Just kidding, but seriously, it just becomes so routine!

You WILL see a big differents in IN-center & being at home.  Heck, I get up in bed with my J and we really enjoy the time with each other.  Im so relaxed now when hooking him up and very seldom do we ever get an alarm.

Just go threw all the 'EXHAUSTIONS" together and rely on your wife till you get the hang of it.  I can almost guarantee, you will be so happy with this modality.

Best of luck to you Bill.  I can't wait to hear of your experiences!    Go NxStage!!  Another In-Center bites the dust! 

God Bless,
lmunchkin
 

[big777bill]

 Tomorrow is the big day! We'll wake up at 5:30 and leave for the training about 7:00. It's a 50 mile ride with VERY intense traffic from Deptford to Marlton. I hope Monday isn't quite as bad as usual, but it will be. Thursday I'll have to take a 1 day break from training to have surgery to move my fistula closer to the surface then back to training on Friday. The RN who does the course is nice and seems to be knowledgeable about NxStage. She will only train 1 couple at a time as opposed to some who do as many as 4 couples at a time. Well I'm rambling so wish me luck and a prayer will not be turned down. I'll post anything I find interesting.   God Bless, Bill

[cassandra]

good luck both of you, and I'll ask my dad to pray for you. I'm sure it will all go smashingly good.

xxx love Cas

[big777bill]

Thank you so much Cassandra Tell your Dad thanks for the prayers. They are really appreciated.

[lmunchkin]

Bill, Im so curious about your first day!  Bet your stomach is in knots right now, as well as your wifes!  She is probably thinking, "what the heck did I get myself into!".  I know I asked myself that!

We were trained by one nurse too.  It is better that way, I think, because you establish a repore with him/her. They can't do several at a time, cause they are training you and giving you direction in your care!  If the nurse had another, then he/she might not give the time needed to you and your wife, and might get anothers prescription mixed up with yours. Its not like school where they teach a group of students.  This is a life altering event and they want your full attention, because life does depend on it!

I also believe, that is the reason for long waiting to do NxStage. Not enough nurses to train this machine, but I believe they are working on that, to better accommodate those who want home hemo.

Please Bill, post your experience. I so admire you & your wifes dedication to quality care! Im so glad "I" did not throw in the towel back when we started.  Thanks to IHD family, we stuck with it and I am soooo thankful we did!

Best of luck & God Bless,
lmunchkin
 

[big777bill]

Day 1 of training is in the books! Patty was extremely nervous all night and on the ride up there. I don't know why because she is a good nurse and takes to medically related things like a fish to water. The training RN told her she could tell it would be easy training us due to Patty's questions and interest in learning NxStage. That seemed to settle her nerves down. I slept. No kidding I couldn't keep my eyes open so the RN told me not to worry about things today and catch some shut eye. That was no problem. In a way that turned out good because it gave Patty and the RN alot of 1 on 1 time. Tomorrow I will do my best to stay awake and learn some of this and it is a lot to learn. Lately D puts me to sleep everytime. The last 5 times in center I slept almost the whole time. Then afterwards I'm still extremely tired. I haven't had the sick feeling or the restless nights like I did before starting D so it must be starting to do what it's supposed to do. I think NxStage is going to be very, very good to me.  God Bless, Bill

[MooseMom]

That's wonderful news!  It's always a wonderful thing to hear about people who take the initiative and swallow their fear so that they can give themselves the best health possible!  You are worth the investment, and for your wife, well, if YOU have better health and are happier when you feel better, then HER life is improved, too.  NxStage is for the improvement of not only your life but also for hers.

Well done to you both!

[boswife]

oh im so happy for ya both .... It's so nice that you sleep!!!!  Thats the best part about being home for 'both' of you is that when you sleep, wifie (thats me too ) gets to take care of other stuff around the house, read, have some knit,crochet, what ever time and you are cozy with the clicker in your hand..lol   oh yea, thats us.. if 'I' were the one on the machine, i'd be on computer, but each to his own and thats what ya get to look forward to   Whos going to do your.... um, sticking???  and are you going to be using buttonholes? are they established... My mind is blank right now with excitment so i prob already know this stuff,,,  Anyway, glad your started 

[big777bill]

MM I'm so glad you mentioned how much better it will be for Patty. She works so hard to make sure I'm OK and worries herself to death over every little thing. She deserves a BIG break from things and I'm hoping this modality will do just that. Imunchkin that's why we have to travel so far because of a lack of training nurses. The only training RN in my county trains 3-6 couples at a time and the course takes up to 8 weeks  . So that's why we travel 50 miles one way for our training. Boswife I still am using a catheter for now. On Thursday I have to have a surgery to move my fistula closer to the surface. Once the fistula is ready we will establish button holes, that seems like the best way to go. I've been missing taking a long hot shower since Nov. 17, 2011. I don't know why I was so tired today but I couldn't keep my eyes open no matter how hard I tried. God Bless you all for your concern and interest
 P.S. They told us we could come in later so we miss the early morning rush traffic.

[lmunchkin]

You & Patty sound just like J & I. We can't stand traffic and do whatever to avoid it.  We schedule everything on Mondays and later morning times, just to avoid the traffic.  I work, but my work is right next door, so if I had car trouble or weather is awful, I could always walk to work. Yes, I agree, I am very lucky in that regard!!!

As you get into this, I believe you will start to feel better because of more frequent D. I had forgot that your wife is a nurse too, and that helps tremendously.  Can't wait till you start needling yourself.  Lots of people here say it is best, cause they know where to stick and how it feels, whereas, another person would not know if it is in or not.

Cant wait till day 2.  Awesome first day yall!  My first day was "Dread".  We went in 2nd day and I told them it was too much and I couldnt do it.  The nurse (male) turned me on to this site!  He said to go on and read some posts on NxStage.  I did and 3rd day, I was like "lets do this".  This site is so awesome. We found courage and strength from this family (IHD). Iam convinced, had we not found this place, our lives would be a totally different story.

Keep up the good work you two & let us know bout tomorrow!
God Bless,
lmunchkin
 

[amanda100wilson]

You and Patty sound just the right kind of people to be embarking on doing home dialysis, and you will get there.  It is a bit daunting at first and I made loads of mistakes during training.  I used to have to follow the instructions step by step and still mistakes.  Now several months in, I could almost assemble the machine 'with my eyes closed' and wonder how I couldhave ever found it so confusing.  So much for the comforts of familiarity with something.

You may like to go to homedialyzersunited.org which although recently has expanded to include all home dialysis is primarily comprised of NxStage users members.  You will find lots of support from the people that belong to this.  They also have a Listserv on Yahoo Groups called NxStage Users which you or Patty to join.  NxStage Users or their care partners can join.  The  Yahoo Group is especially good for support and for getting answers to any questions that you may have, now or in the future

[justjen321]

Yay you!

Congratulations. We started training same day as you. We'll have to have a little IHD NxStage Graduation Party in a few weeks!

[big777bill]

 Got 3 days under our belt now and all I can say this is intensive training. At first we were completely overwhelmed but by the third day it's easy to see the progress made so far. The worst part may be the traveling and time involved. By the time we get back home I'm wiped out. I have noticed that the daily dialysis itself is much easier on me. You don't get that totally washed out feeling that I noticed after in center.
 Justjen321 let me know how it's going for you I'd be very interested to see how you all are doing. Imunchkin Patty almost did the same as you. She was ready to throw in the towel at first but on day 3 she was going at it like a pro. I think this will work out much the same as it did for you and your husband.
 Tomorrow we have to go to have the surgery for the fistula transposition. Keep us in prayer. God Bless, Bill

[justjen321]

Congrats to you and Patty. If she's anything like me, she's feeling a little better about things today.

We are doing okay, although we ad an infiltration today, so we likely won't dialyze tomorrow. -Hopefully- back at it on Friday, although it will really depend on his arm. Too much movement whist still using sharps. So, word to the wise, when you start your buttonholes, be STILL! Once you get to blunts you can wiggle.

So, after your training tomorrow, I'll be racing to catch up to you and Patty!

[lmunchkin]

Bill its almost a carbon copy, huh?  The only thing different, and Im glad too, is J already had a fistula established.  That was alot easier on me.  Whereas Patty is dealing with a perm cath (I think) which requires special techniques.

I guess you are having your fistula worked on today!  Been thinking bout you and praying all goes well.  Let us know how it went.

God Bless,
lmunchkin

[boswife]

   Ya know what i remember about training.... Going home, fixen dinner, and heading to a quiet place and reading my notes over and reading reading reading...  I was soooooooooo WEARD about it all.  It's amazing what 'fear' does to you   also, what a good trainer does "FOR" you.  I can say mine was very patient, but the methods were kinda screwie.  I wonder if you guys are being trained for Pure Flow or Bags or both together.  I disliked that fact that we went back and forth with that .  It REALLY messed with me.. I wasnt told of the concept that we would be using PF, but because of how the 5 day training week goes, we would start with bags, then PF for 3 days, then the 5th day bags again... I thought that was the protocol not just their crazy way of training 'both' methods.  Anyway..lol  HOpe that didnt mess anyone up, I was just reliving 'MY' experience, and hoping (and it sounds like it is) yours is better..    i just wish i would have learned one then the other as i am a real 'by the book' repitition person and well, it wasnt happening that way.. 
Soooooo, congrats to all, sounds like ya are all doen great and on your successful way. 
ps 
You guys sound like this    and i looked like this      lol....   

[big777bill]

 I just got home from the fistula surgery. We got there 10am Thurs. and got home 4pm Fri. I didn't know until they were rolling me into the OR that I was staying the night. The incision goes from my elbow to about 2 inches short of my armpit and this sucker hurts! Now I hope that after 3 surgeries this thing works right. In the beginning they make it sound like it's so easy. Have a fistula put in and start dialysis. Then they say "oh you'll need 1 more surgery" and then they tell you again! . Next week we'll start training again on Mon.  I pray this arm calms down some by then    God Bless. Bill

[amanda100wilson]

Big Bill, I'm glad that you were kep in, and I'm glad that you can validate my experience with this surgery that it hurtts.  My vascular surgeon reluctantly kep me in overnight because of the pain, and then is firmly of the opinion that I have a low pain threshold even though he did concede that the surgery was down to the bone.  Huh!!!  Maybe he needs to experience it before making this statement?