Anyone feel like talking me 'into' or 'out of' starting NXstage with hubby

[lillinny]

They sure aren't making it easy for you!

[boswife]

nope, not too easy..which is extra tough beings im having to push for something i REALLY dont want to do..lol  Well, you know what i mean, i want to , but fear it big time.  But, i did get some mabie good news today.  The head lady at our nxStage training center is contacting hubbys neph, and going to ask for a referal to have ME stick him.  We'll see.  Im thinking they may have me come to that center for that part of the training first, go back to his center once trained until we can start home D training back at that center..lol..........We shall see :-)  Sure is good to hear from ya all!!!  Seems i need constant encouragement to get over this needle thing i got..  It's working though :-)

[lillinny]

I'm glad!  That is good news.  Ya know, I jumped in with both feet and then saw the big picture and was rather freaked out. . . but currently it is going well.  It just becomes part of the daily process and less freakly (like everything) as you get use to it.    

this site has been so helpful for both me and hub as we realize that we aren't the only ones doing this and others make mistakes too! 

You'll get use to the needle sticks and how that the buttonholes are firmly established, it really is pretty easy.  For a while I doubted that it would ever be easy!

[boswife]

thanks lillinny    Ya know, i am so motivated to get started RIGHT NOW and yet so worried that by the time i get started, im going to have less motivation and therefore, more fearful once again.  I think im going to have to print out all the info i've recieved so as to be able to freshen it up my knowlidge once it gets closer.. wat happened with the "referal" situation is,,,,,,well it's not going to happen.    What we did solve though is that toward the end of Nov, we will do hub's regular treatment at thier center and they will train me to cannulate then.  Then, I'll be well versed in that when i start the home dialysis machine training.  I also asked the other lady at our center how her buttonhole's were doing now that various techs are canulating.  She said WONDERFUL so that gave me at least some confidence.  Not happy, but feeling a bit better at  least.  Im sooooooo glad its going well for you.  I LOVE hearing everything, so fill me in to everything you feel up to writing... 

tyefly... when you say you do everything yourself, your saying 'to' yourself??  I tell ya, i have huge admiration for ALL of you here doing it 'to' or 'for' someone.  this is an amazing bunch of people for sure.  Im so glad im heading in this direction at least.  Never would have happened without ALL the info here.

[lillinny]

Hi, boswife............  had a few positive thoughts I wanted to share with you!  First of all, the online call center for NxState is WONDERFUL.  I cannot tell you how great they are.  They always immediately understand the problem and walk you thru resolving it at your own pace.  There is NEVER a feeling that they are rushing you or that you are dumb (even when the question may be VERY dumb)!  I have called them numerous times over the last few months and every experience has been great.  So many times you call a 'help line' and they are clueless, impatient, and rushed.  Such is not the case with NxStage!

[boswife]

thanks so much lillinny..  I need all the incouragement and reality's of this i can get :-)  We talked to hubbys neph today (appt) and he is very happy that we are going for this.  He sais that with my grate support <pats self on back..hehe>  he should do great.  He told us of the 'stages' you go through ie.. elated, learning, then the reality..or something like that, and i told him i have learned so much from IHD.com and others doing it that im pretty sure i got the gist and am prepared for that getting over the hump stage.  I admit i fear the 'reality' part of it lol.....  the humdrum everyday ..every dang day  of it,, but if it's going to give him a better life, im up for it.. (yeah, i say that NOW...ha) He also assured me that if we have to come back incenter, its not the worst thing in the world and dont feel bad. 
So, anytime you want to through any info, good or bad, im loving hearing!!
thanks again.

[lillinny]

Hi!  Yes, we went thru much the same.  Felt like we were jumping one hurdle after another (shunt in neck, fistula, training) and that once we were done with that - life as we once knew it would be back and everything would be ducky.  Well.........  then realization hit that we do this 6x a week and it isn't a quick/easy process.  But have overcome that (seriously!) and it is getting to be more routine.  He feels much better than at center and isn't dizzy and crampy now. 

This site has been a godsend for both he and me.  I print out various posts of interest and he reads them and it has helped him realize that he ain't alone!     It helps me realize that when I make a really silly 'oops' that other have done it before me.  And, things are getting so much easier!  Every now and then get an alarm that we can't resolve (about 1x a month) and we terminate treatment early.  Also got the organizational stuff (ordering supplies from the 3 vendors) has fallen into place as well as storage. 

Take care and hang in there. 

[PVUgrad]

This is so encouraging to read how everyone says they FINALLY think it is second nature to do. We have not started yet, and I was wondering what I was getting into when I said I would opt to do this at home. I hate needles and having to stick anyone. But if it keeps my "soulmate" around longer, I am ready do give anything a try!

[tyefly]

Yes I do everything myself.....wouldn't have it anyother way...... except.... if someone wants to help carry boxes up stairs......LOL
 
I believe anyone can do just about anything if they really want to....    I really wanted to continue to go places when I want.....that was my motivation......  I have done well......you will do well too.......there are several tricks to getting around problems.....  many of us have some up our sleeves....

[boswife]

This is all just increadably interesting and boosting.. I read each and every one to hubby as well and it has encouraged us both.  We did have our pre class and signed papers yesterday saying we're ready to go and settled on how the route for us will be.  I get (ha!) to start needling in about two-three weeks. They will transfer us to their unit which is 1/2 hour away vs 4 min  ) then after about 3 weeks of canulating during his regular 3x a week sessions,  they should have an opening for us to start the 2-3 week class on the machine where i'll be doing it all.. <picture me sweating about now..lol>  I know i'll get it, but sometimes i really fear that my craphead anxiety will get the best of me and block my brain..  So far, im feeling very at ease about it so im hoping to breeze through it. I so very much appreciate hearing of experiences here. I cant thank you enough!!your like  's 

ANd.. PVUgrad, do you have training in the makings??  It'll be fun to hear of how your doing too..  It's a huge step for us, and i cant even begin to say how much i've grown from reading here.  This is a great thread, and hopw you got some good out of it too. 

And tyefly, what a brave woman you are.  You make me proud of your gumption and i will think of you when i am feeling whimpy about carring this through.  I do know and believe that it is my "want to's" that will make it happen.  I've overcome the 'watching' of the canulating which i thought would never happen, and that was huge.  Im one who once im set in motion, i will see it through, even if it kills me..lol  Hubby is unbelieveably happy about it so cant back out now is the hugest part of it.  I want him happy and and as feeling good as he can, so,,, here we go!!

[PVUgrad]

Hey Boswife,

Hubby just got his fistula put in about a month ago. So I guess it will be another 3 or 4 months? his function is down to 12% with his creatinine at 5.5. Which doesn't sound bad compared to some of the other stories I have been reading. He held out for 5 years at 20%, until he got a sulfa drug for a UTI.

Get this. They is no one to train us here in Augusta, GA! So we have to cross over into South Carolina. That will be about an hour each way.

I just wish we had all of this behind us....

[boswife]

hi PVUgrad , and oh brother!! I certainly dont blaim you for wishing this was all behind you.. i think it's going to be a pain to go 1/2 an hour to and from our training for nxStage,  vs 3 min to dialysis much less your HOUR EACH way  .   I too wish this part was behind us.. I have my fears of it, but thanks to friends here, im 'putten on my big girl pants' hehe and toughening up..  DAng it, im going to get back with you cause i have more to say..but hubby calling...

[boswife]

ok back PVUgrad,  so you havent started dialysis at all yet??  I was very sad when i heard how your hubby had held his position for so long and then the sulfa drug got him.. Thats similar to our situation and i am still in denial with my hubby if he wont 'bounce back' and not need D at all.  Beings hes been on now for 14mo, im guessing he's not bouncing back, though his #'s are always good.  I think your so brave diving right into NxStage.  WE wanted to after a few monts in center, but i was way too uncomfortable at that time to even go through training.  Hole different story now.  Im so ready even though our experience in center has been really good and we'll miss them actually.  I will be posting my experience (oh yeah) and hopfully it will be encouraging to someone else.  I know that the only way we're even attempting this is due to those on here who are offering they're experience to me.  All the best.. Hopfully, you'll not even need that fistula for a while, but great your getting it ready.. Oh yea, hubby got his 3 days before he was put on D, so since it wasnt ready, he had to have the neck cath.. you DONT want that if you can avoid it so your doing the right thing.. 

[PVUgrad]

I suppose the reason we (me) have decided to try the D at home is mainly because of my husband's others problems. Since he is confined to a wheelchair and can not transfer, it would be just easier to do everything here at home. Then I don't have to get both me and him dressed to go, but do everything in my PJs. 

Plus he already has fatigue pretty bad from his MS, so doing the D in center would just finish him off...

[boswife]

I surly hope that this dialysis will give him a needed lift.  Have you asked if it could be possible that you get trained at home??  I mean they do a home visit, seems that they could *possibly* have something like that for special needs like yours.  That would be amazing for you.. I hope things work out for you without too much stress.  it's hard on the both of you.. 
blessings to you both

[PVUgrad]

Great thought BOS, however I highly doubt it since they don't have anyone in this area of Georgia for training in center. That is why we either have to drive to ATL, 2 hours, or over to South Carolina, an hour.

But maybe his body will say "I'll show you for putting in that AV fistula. I just hold out here at 12% for another couple of years."

Are you in charge of the home D when you start, or will you be just assisting your husband, as in 2 heads are better than one?

[boswife]

my hubby bo held out a long time and who knows, mabie yours will get some bounce back, ya just dont know.  and, I the needle phobe  will be doing his cannulating,  WE will be doing the set up and take down of the machines, and i will do the button pushing at least for a while.  We will both learn, and hubby figuring he'll give the 'sticking' a shot in time, so we shall see.