Starting NxStage training!!!

[amanda100wilson]

No, I don 't have it.  I tend do determine how much time I have and set the flow rate based on that, keeping it as low as possible,  try to keep it below 400.  I woul appreciate you sending me a copy.

[big777bill]

 Things went smooth as silk today! Everything seemed to come to me and Patty naturally. I'm starting to feel comfortable enough to come home with it very soon. The instructor is concentrating on what to do for the most common alarms and the ones that are more critical. She has been sending different  equipment home with us all week. I wish I had a whole extra room to dedicate to dialysis.  Now I have to pray one of the boys decides it's time to fly the nest, lol. God Bless, Bill

[lmunchkin]

Bill, that is awesome.  Have they found out about the well water test yet?  Cute about one "flying the nest". This world is so dificult now, it is hard to move out on your own with uncertainty all around. Once they are gone, you will miss and worry continuously about them. But you just have to trust, they will make the right decisions! Amen?

Amanda, I would be glad to send you a copy.  I will PM you.

God Bless,
lmunchkin
 

[big777bill]

 Up early today. Patty and I have to go to Philly to see my VS and have my fistula checked out. Then we backtrack into NJ to training. Going to be a long day! We took 1 sample of water up last week but she gave us the wrong container so we got it in the correct one and it went out to the lab on this past  Tuesday. Imunchkin, 1 of our sons is 40 and the other 27. I may be wrong but I believe they've hung around long enough, lol. God Bless, Bill

[Whamo]

I'm curious about Nextstage.  Do they let you go back on hemo for short periods if your caretaker has to leave town for awhile?  And if you dialyize every night then how to your poke wounds ever heal?  Can you take showers?  To answer Amanda, my wife wouldn't need much training because she is a Nurse Supervisor with 15 years experience in an intensive care cardiac ward. 

[amanda100wilson]

My unit says that I can go in-unit if my husband is away.  Not sure if that is the same for all units.  I shower every day, make sure that I do it before I do dialysis ans then keep band-aids over the buttonholes until the next day when I remove them to take my next shower.  They don't heal but are just little bumps with the tiny scab covering the hole in the middle.  Remember, some of the members on here do NxStage on their own and manage perfectly well.  I would not have any fears about doing it alone, now that I am comofrtable with what I am doing.  My husband only plays a nominal role anyway.  He is downstairs and we use a baby monitor.

[justjen321]

Go Bill GO!

[cassandra]

Wow I'm really impressed Bill, and Patty. I had to read up for a bit, cos been busy. But wow, congrats.

love Cas

[big777bill]

Thank you Jen & Cas! I'll be glad to get home to do D. The in center was not for me. All I've been thinking about for the last 3 weeks is green, yellow and white connections, chicken foot, dialysate rate, BVP BFR, effluent pressure, filtration fraction, heperin, saline bolus, Blood Pressure, pureflow, cycler, Mr Peanut, fluid warmer, manual rinseback, vascular flow and so on. My brain has been on extreme overload but it will all be worth it. Cas, Hopefully you will be able to have access to NxStage in the UK soon.

[amanda100wilson]

Chicken foot?  What is that?

[boswife]

hehe... chicken foot is the 3 toed green lines from the pure flow...  and Bill,,,,,,,,  ohhhhhhhhhhh the dreams i had while 'in training'.  I lived breathed, slept, this stuff.  I sometimes cant even believe that we are where we are with it now.  It was HUGE to me.  But it does happen and 'flow' so well once ya trust that it will.  It's doing it over and over and seeing that all is good that finally settles your brain.  I wish you peace and rest.. 

[amanda100wilson]

Oh, I do bags not Pureflow.

[big777bill]

 That adds a lot of extra lifting, and waste, using the bags. Why don't they have you using the Pure-Flow?  God Bless, Bill

[amanda100wilson]

I must admit that I don't really know, although if I want to use one, I can do so.  I just haven't been to bothered.  I seem to be forever reading about problems with them, that I haven't been encouraged to switch.

[lmunchkin]

I'm curious about Nextstage.  Do they let you go back on hemo for short periods if your caretaker has to leave town for awhile?  And if you dialyize every night then how to your poke wounds ever heal?  Can you take showers?  To answer Amanda, my wife wouldn't need much training because she is a Nurse Supervisor with 15 years experience in an intensive care cardiac ward. 

Yes they will D you in-center for awhile if your caregiver wants time away.  Feb 2011, I slipped on ice, broke my lt ankle on both sides. I was not allowed to weight bear for a long while. My neph told me that he would have to go in-center till Ortho Doc released me. I was so upset, but what could I do.  Looking back, Im glad she did that cause I was not capable of standing on left foot. Ive been afraid of Ice ever sense.

But yea, you can go in-center if anything comes up that warrants it.  Check with your neph and make sure.  I know they came through for me, when I was not capable!

hehe... chicken foot is the 3 toed green lines from the pure flow...  and Bill,,,,,,,,  ohhhhhhhhhhh the dreams i had while 'in training'.  I lived breathed, slept, this stuff.  I sometimes cant even believe that we are where we are with it now.  It was HUGE to me.  But it does happen and 'flow' so well once ya trust that it will.  It's doing it over and over and seeing that all is good that finally settles your brain.  I wish you peace and rest.. 

Boswife, you know I can't believe its been almost 2yrs for us.  It seems like yesterday.

Amanda, I put that formula sheet in the mail Friday.  Let me know when you get it, okay?

Bill, its a shame they sent it in the wrong container.  You could have had the results by now! Oh well, what ya gonna do!   

lmunchkin
 

[boswife]

imunch,,,,,,,,, i had to laugh and note this to you and since i dont know how to "quote" correctly, i'll just spereate it with quotes..lol

 "My neph told me "   <------  Whos neph...lol    It made me laugh because i say "my" this or that all the time .. Guess we REALLY are a part of them huh..hehe..

[lmunchkin]

Boswife, I really feel like we do have this disease too, even though not the physical aspects, but all the other!  This disease has been our lives, and we have been consumed with it!  Sometimes, I get aggravated with it, but guess what!  They do too! So yes, we are all in this ship together, my friend!

Im glad that Im not in their shoes, but am also blessed to share their experiences with them! All the ups and the downs! Im still here, Im not going anywhere without my man!  If I could sit in that chair for him, I would, and you would too!!

lmunchin

[ESRD Survivor]

I was told in training it is strongly recommended to go in center about every 3 months to give your care partner a break.  That way there is less burn out.  We have only been doing this on our own for 3 weeks and I can see how burn out could become easy for both of us.

[amanda100wilson]

That's why my care partner is in the background and I do everything for myself which is precisely the way that I want it.

[cassandra]

Wow Amanda, for some reason I never noticed how much kidney-history we got in common. I'm gonna try to do as much as poss myself too, so I can keep my care partner just 'part-time', and hubby for life.

love to all, Cas

[amanda100wilson]

Cassandra, are you already doing NxStage training or getting ready to start?

Since I use bags my husband does sometimes set the machine up as far as snap and tap.  When We had first completed the training (he does know how to do everything in case for some reason I can't) he did help me, which was good because it was a bit overwhelming, but gradually as my confidnce grew, I weaned myself from his help.  It used to make me feel really sressed having to call for him when I was ready for anything to be done.  Now there is a lot less stress.  The only downside is that I have to do it around his work schedule and then my son's activities.  Quite honestly, I would rather do it when I want to regardless of whether he is there or not.  I have said a couple of times that I will do so, usually when we have had an arguement, but then because he trained with me, he feels responsible.

Strange isn't itthat grown people can choose to take the risks of jumping out of airoplanes and that is ok, but when someone wants to accept the risks of dialysing alone, that isn't?  Yeah, yeah, I understand all the liability issues, but I would be more than happy to sign a waiver. 

[cassandra]

I have started needling myself to create buttonholes, but in my neighbourhood are only 2 people using Nxstage. The government here is aiming for a huge increase of HH, and as I have informed the HH-coordinator that I am incredibly enthusiastic about HH, but only on Nxstage, I hope to hear positive news about starting to train soon. I hope I can get it all as well organised as you do. And yes I would love to dialyse when hubby is at work or something too. I have read that HH alone is okay-ed in some countries.

love Cas

[lmunchkin]

Well, I do want to say that Im not complaining.  My J. can't do alot of things, so he has to rely on me!  Its okay though. His sight is not the best and he has slight shaking in his hands.  Then if he needs to go to bath room, he will ask me to get his prosthetic.  Sometimes it fits and sometimes it doesnt.

But when he gets in the wheelchair, he will whip up a meal and have dinner ready when I get home.  He really does try, Ill give him that. 

I really don't mind so much, sometimes it can get to me, but most the time I DONT LET IT!

God Bless,
lmunchkin
 

[big777bill]

 Imunchkin, J is very lucky to have you and I know you feel the same about him. 

[amanda100wilson]

Lmunchkin, I'll let you know when I get the chart.  Your J has got great support from you.