Starting NxStage training!!!

[big777bill]

 Amanda I think those surgeons need a dose of their own medicine sometimes. How could something like this not hurt? I got your back on this!

[boswife]

im glad thats over and im sure sorry that it's so painful..   How could someone think it wouldnt be and throw comments...     Am praying and hope for fast healing.  Hope you get to just rest this weekend and give it a good healing time.   

[lmunchkin]

Awe guys, Im sorry about the pain.  I may be the one who said there wasnt much pain, cause my husband said it never hurt.  I think his VS went in 2more times to tie up some offshoots, but he never complained that he was in pain.  But then again, he has a very high tolerance for pain.

So sorry bout that Bill & Amanda.  I should had known that this may affect people differently.  Plus, Bill, you were having yours raised and Amanda, to the bone, just makes me grench!!! Ew that is horrible!

I will try to be mindful in the future that not everyone is the same.

So Bill, you are going to have to wait till soreness is well till you can resume training?  Im glad you came through the surgery ok.

God Bless,
lmunchkin

[amanda100wilson]

Lmunchkin, it wasn't you.  My surgeon was the one who was pretty disparaging that I would need to stay in overnight and then, after recent surgery to havemy PD catheter removed, following which, I had some escalating pain (caused, I think by a nerve being pinched between a haematoma and scar tissue), told me that I had a low pain threshold.  For my vein transposition, I was like BigBill sliced down to the bone from the elbow to the armpit

[lmunchkin]

You mean they couldnt pull up anything from ur wrist to the elbow? That may be another reason why J had no problems, cause his is between wrist to elbow.  He has a beautiful thick rope from wrist to elbow.  Thank God, his fistula has worked great for 3 yrs now. Not to mention, "the Sweet Mama"    who sticks him all the time,does such a terrific job in needling!!    lol  TeeeHee!!!!! 

lmunchkin

[amanda100wilson]

Whoops, just re-read my previous post.  I realise that it suggests that BigBill sliced my arm

[lmunchkin]

Whoops, just re-read my previous post.  I realise that it suggests that BigBill sliced my arm

Amanda, you are a "trip" as my Grand child would say!  I had to laugh cause I reread and thought the same thing   

lmunch

[big777bill]

  Now Amanda do you really think I would cut your arm? I haven't cut anyone for ages
  Now you do realize I'm jesting?

[amanda100wilson]

Of course, you sound too nice to do anthing mean.

[Whamo]

They knocked out all the nerves to my arm when they did my fistula surgery, and I swear, it still hurt.  My arm was dangling like it was dead for 8 hours.  But now that it's working I'm glad I went through it.  I'm just glad I didn't have to do it again. 
I wish I could talk my wife into supporting me in going home dialysis.  She's afraid it will pin her down, that she won't be able to travel, do things, etc.  I think in time I'll be able to talk her into it.  I ordered the Nextstage DVD to get some sales support.  I'll be following your thread to see your progress.  Good luck.

[amanda100wilson]

Couldn't you talk her into at least doing the training with you?

[cattlekid]

NxStage will do just the opposite.  Yes, it's 5x per week minimum, but you can do these treatments at whatever time of day or night fits your schedule.  It's also a portable machine if you want to travel.  If you are trained to do your own sticking, then your wife doesn't have to be your only care partner.  I do my own sticking and if my husband ever needed to be out of town or was unavailable for some reason, I can always call a friend to come and sit with me while I do my treatment.  I bribe with wine, although I haven't had to do so yet.   

Also, I have found that NxStage treatments don't wash me out.  I can do a treatment, spend the 20 minutes breaking down the machine and cleaning up and then I'm ready to go out and do whatever.  Whereas with in center treatments, I went home and crashed for the next 8-10 hours.

They knocked out all the nerves to my arm when they did my fistula surgery, and I swear, it still hurt.  My arm was dangling like it was dead for 8 hours.  But now that it's working I'm glad I went through it.  I'm just glad I didn't have to do it again. 
I wish I could talk my wife into supporting me in going home dialysis.  She's afraid it will pin her down, that she won't be able to travel, do things, etc.  I think in time I'll be able to talk her into it.  I ordered the Nextstage DVD to get some sales support.  I'll be following your thread to see your progress.  Good luck.

[big777bill]

 Went back to classes after a 4 day hiatus. We were very rusty from the long weekend. I think it did us more harm than good but I had to get the fistula moved so what can you do? The instructor pushed Patty pretty hard today which had her nervous as a cat at first. After she settled down and concentrated on what she already knew things went great. The incision has calmed down and is mostly pain free now so that was a help. We've got the setup about 75% down now. It does seem to get easier everyday. We have to find out if we can use the Pure Flow with our well water. I hope we can because hanging and storing all those bags would be harder. Hoping by the end of this week we've got most of this memorized but we'll probably need 1 more week at least. This is much harder than I thought it would be but we'll get it. God Bless, Bill

[boswife]

Aw bill...and wife   ,  it does get easier and easier and once the 'nerves' lessen, you'll see it's even easier    I hope your healing well, and asking, praying for blessings on ya both,,,     

[lmunchkin]

I agree with Boswife.  It is very overwhelming, no doubt.  But as you learn over time, it will all click.  You and Patty will be able to do it blindfolded.  If you go apply for a new job, and get hired, you don't know what you need to do the minute you start.  No, you learn what you need to do!  That is what this is, like a new job.  Over time, you will perfect it and you will look back and wonder, "Why the heck you made it so hard!"

But Im not shedding on this very lightly cause it is very difficult to know and learn.  Once you get home and do it without "boss" looking over your shoulder, you both will settle in and do very well.

In regards to well water, NxStage should have that covered too!  You may have to change out your "Pak" more often, but I do not see why you cant do PureFlow.  I have a friend who has well water and does use Pureflow on her husband too.  You will love Pureflow once you get use to it.  I agree, those pre-mixed bags can really get to be a hassel over time.

We have Saks that holds 60l and we can make a 3 day batch out of it.  No lifting or tearing down of bags, and to me, that is great!!!!

Bill, you tell Patty how awesome she is for doing this for you.  Tell her of your love for her and how much you respect & care for her.  Make sure she is aware that you really need her help.  She is your Angel and she needs to know that.  She has alot on her, so it never hurts to be reminded of your love!  I know you are going through alot, but always, be mindful you are not alone in this!  We spouses need that assurance.  It will make us stronger and remember what is important in our lives!  I know sometimes we forget about the other when dealing with this roller coaster that stops only when it wants.  We just have to "make" time to appreciate our significant other!

God Bless you & Patty,
lmunchkin

[big777bill]

Imunchkin  thank you so much for the encouragement! It is getting easier as the days go by.  You're absolutely right about "the boss" looking over our shoulders. She really rattles Patty. I tell her to try to relax but that's impossible. When there's no pressure and it's me and her she knows almost all the steps. She's trying too hard and I love her for it because it's only because she cares so much. I will definitely take your advice about telling her how much she means to me. It's easy to forget to tell someone who is with you all the time. I guess it goes unspoken and it shouldn't. God Bless, Bill

[lmunchkin]

Are you feeling any better since D with trainer on NxStage?  I know the training nurses do it to get you guys trained and comfortable at home, thus, seemingly shorter dialysis.  But once you get home and incorporate this in your lives (a the times you choose) it will be alot better and you can extend the time as you wish.  I know J felt better after the 2nd day in training, but as I have said, he had a fistula established already.  Im sure that is something you and Patty have some frustrations with, and perfectly understandable.  But the Good Lord will see yall through this too!  He is always near and I know you know that too!!!

Well I got to get my beauty sleep!  Take care and let us know how its going!

God Bless,
lmunchkin

[big777bill]

 Yes, thank you, I am feeling a ton better since starting daily hemo. We had a big delivery of supplies to start at home. We still have to bring a machine and pure flow home with us. That will probably be next week. So far we've had 7 days of training and it seems like a month. I'm taking over setting the machine up. Patty  isn't very mechanical and she doesn't respond well to the instructors style of teaching. I know when we get home and it's just her and I she'll take right off with it. It can be overwhelming there are so many steps to remember.  Actually I am amazed at how much better I feel. I haven't felt this good in over a year. The stamina is still low but feeling better will encourage me to do more. I hope to start a walking routine as soon we are all settled in with the home hemo. All in all things are going well I just can't wait for it all to be behind us. God Bless, Bill

[cassandra]

glad to hear of all that positiveness Bill. Keep going and love to Patty too.

love Cas

[big777bill]

 Another week down! Learning about the different alarms and what needs to be done. Hopefully one more week and we'll switch locations to our house. I've got the machine setup down pretty good but still need some time before it comes to me more naturally. I have to take well water samples back on Monday to see if we can use the pure flow. I'm feeling good but very tired right now. It has been a long week. Talk to ya'll later, God Bless, Bill

[lmunchkin]

Hey Bill.  Been out of the loop past couple days.  Everything ok with you and Patty!  You getting it little by little?  I meant to ask you, are they training with the PureFlow?  I hope so, cause otherwise it will be another section to learn (Not hard once you get use to it).  Just don't want them to train with hanging bags.

Have they heard anything on your water test yet (AAMI)?  I would be shocked if they said you cant use the PF unit.  It would have to be God awful well water in my estimation. 

I like your St. Pattys clover.  A customer came into work the other day and gave me a bracelet that had the clover as charms. It was the sweetest thing and very unexpected.  So Cute!

Keep us posted Bill.  You can't let us down now!  lol

God Bless,
lmunchkin

[big777bill]

 I think I can see the light at the end of the tunnel! Next week we will be coming home with the NxStage and pureflow. This training is wearing me thin but it is getting easier. At first it is very intimidating. There are so many steps to remember. The good thing is you can use a cheat sheet if you're unsure of anything. God Bless, Bill

[lmunchkin]

I think I can see the light at the end of the tunnel! Next week we will be coming home with the NxStage and pureflow. This training is wearing me thin but it is getting easier. At first it is very intimidating. There are so many steps to remember. The good thing is you can use a cheat sheet if you're unsure of anything. God Bless, Bill

Ah Yes, those cheat sheets, I still refer to mine.  They certainly help with your perameters. Just determine what you need to take off and it will help alot in your toggle numbers!  Im so glad you guys are getting comfy with it.  I always felt if you can get through the first week, you are doing great. 

I have learned more about ESRD through NxStage.  Not just the doing it, but why it is done that way.  It all begins to come together.  I feel more comfortable with it now and very comfortable solving any problems I have and, NxStage Tech support is Fantastic.  But now days, I just figure out the problem, (which I dont have anymore) and resolve it.

One thing you and Patty need to know, is the machine is not going to let you make a Life threatening mistake.  It will completely shut off.  You may have blood in the tubes, but nothing will enter your body that would be fatal.  It is an awesome little "jewel".  We love it.

J & I went to PCB, Fla back in October for 2 weeks. We drove down in our van, and we had a ball.  The machine, although a little heavy and awkward for me to lift, was fantasticly portable.  We just put it on wheels and when we arrived at the place, help was there to help me get it in the trailer. We stayed in this gated community, that had two pools, a bay on one end and the ocean on the other. Had everything within that place.  Golf carts were all over there.  We would get up early and ride cart to bay and sit and watch people fish.  We would take frequent strolls in that cart.  Then I would go to the beach myself, cause J could not take his prosthetic for the sand. 

We will go back sometime in the future.  It was the most peaceful Vacation Ive ever known.  I want him to enjoy every moment he has. He is an awesome man, and deserves it.

But you and Patty will love this modality. Once we stopped fighting it at every side, we settled in with it, and the approach to this machine changed us both.  We wheel it out side on deck with long extenstion cord and D him outside with drain line going out to the grass or plants.  If we couldnt do the things we do with it, we wouldnt be doing it. This is a modern marvel, that makes people who are dialysising be a little freer than the traditional D.  It is wonderful, and has allowed us to take control of our loved ones care.

Darn it, Im rambling again.  I am just so excited about this NxStage.  I pray we never go back to In-center!

God Bless,
lmunchkin
 

[amanda100wilson]

I was toldby my nurse that I should be using my 'cheat' sheet, although I wouldn't suggest that you think of it as that.  There is no reason why you need to remember it.  In time you will be able to set it up without needing to refer to it.  Remember, it isn't a test, it's all about safety.  Make mistakes because you are trying to remember things rather than referring to the guide and that is when you will get alarms because you will have forgotten to do something.  I've been doing NxStage since October and it's really only now that I am confident about dealing with the most common alarms, and don't get panic stricken when one goes off.  You really don't want to have to trouble-shoot more than you need to when you just get going.  In my experience, so far, the most common alarms are 11s, immediately followed by a 12, and a 24 alarm.  I used to have some trouble rectifying the 11/12 because when the 12 went off I would then press mute and stop, then treatment, which would start the 11 alarm all over again.  In the early days, I just couldn't get my head around it.  My set up wasn't great for half my training because the machine wasn't at a height that I could access it, and my husband had to do it for me, and I think that this accounts for why it took me some time to feel comfortable operating the buttons.  Anyway, you will get there.

[lmunchkin]

Oh no, I meant the sheet that helps to "Setting the Ultrafiltration Rate'.  Not the set up cheat sheet.  I don't need that anymore either.  It is a formula sheet that shows you what to set UFR at by what is taken off and how much time.  Amanda, if you don't have this, PM me and I can send you a copy!  Its just a helpful formual!  You probably have it, but I do refer to it to determine the best UFR. It kind of balances out for ease!  Its a sheet that nurses use while training patients to do NxStage.  Everybody is so different, no two patients are a like, and they use this sheet as a guide for setting perimeters per the patient. It is a very useful tool and if anyone who is doing or training on NxStage does not have this formula, I will be glad to send copies.  Just PM me.

Na, I really don't look at set up sheets cause I don't need to anymore!  Sorry Bill, I was thinking the wrong "cheat Sheet".  But whatever makes it work for you, go with it!  Your doing great!!!!!

God Bless,
lmunchkin