Nxstage Start Date

[The Noob]

we start Oct. 17. Noon to 5. DH fistula coming along and doc okayed start training with permacath and work on fistula, but since its 2 weeks away and all went flawless today, may be ready by then?

all of Nxstage newbies, lets keep eachother updated.

sat with our training nurse today. we will be doing bags as we won't be at it too long. she is coming out tuesday for the home visit. she's a friend of ours so i will make a nice lunch. all she has to check on is if we have a drain and an outlet. other than that we will all have a chance to sit and chat. its a long drive for her so make her something good to eat. she has 4 children under 7..LOL..

we will using the Nxstage One, with 25-30L per treatment. she will help me figure out a good organizational area. also what we need and son. she said we will have everything at home by end of training. our flow sheets can be faxed or attached to an email and sent either every day, or once a week. she doesn't know about a dialysis chair but we'll figure out alternative when she is here tuesday.
also, everything is approved, we didn't have to meet with anyone. we did today just because it was clinic day. we can sign papers while in training. she says standard homeowner insurance is all thats required. it sounds more simple than we thought. DH will get a 3 hours treatment every we are there. 1 hour to from set up to running or less.
Nxstage users site has a step by step video. she said she recently trained an older woman to do this with only a neighbor to assist if needed.

did hear back finally from transplant nurse today. Tx doc still hasn't decided what to do yet about wanting an MRI, even though all looks normal. they said it wasn't clear enough. she is going to try to track him down and if not, will see him Monday. (come on already. i can see us sitting there the last day of training, getting the surgery date called in..LOL)

ok, anyone else report in? (can you tell we're excited!)

[cattlekid]

I have my start date as well - November 1st.  Have to figure out yet how I will be taking the time off.  Spoke to the nurse today who said starting at 10AM each day - but I told her that wasn't half days so I will probably push it back a bit to noon so I can at least work a couple of hours in the morning. 

[The Noob]

excited???!!!

have a question from another family at clinic. can a patient do home hemo with a graft?

[boswife]

Im so excited for you guys...  I remember being so excited for myself..lol   I am usually so chatty when it comes to NxStage but i've been so wore out these days (im not the dialysizor (wow, hows that for spelling) so it's not because of that) that i just havent been chatty about anything.  I am so happy for yu though and wish you the best. 

[tyefly]

Great to hear.....there are many of us here if you have questions.....  I am sure you will do fine...... Sounds like you have a nurse who supports you and will help you succeed......

let us know how you are doing.....

Maybe someday if you have a interest you can do nocturnal.....  which is another chapter in better dialysis....

[alewis328]

D starts NxStage training on Thursday. PLEASE let this be the thing we need until transplant! I will have to call our coordinator again tomorrow. My $$ is betting on that I wont get her again...and wont get any answers AGAIN. She is worthless. Seriously. But we have been approved for every requirement thrown at us. So I am ready to hear ~ he is listed! So is he. He is ready for any light at the end of the tunnel. In fact, we both are!

[The Noob]

you must be at the same transplant hospital we're at! our tx nurse is good but the donor nurse and docs are slower than molasses.

you said he got his fistula one day, and less than week later is doing Nxstage training? is this a graft? just curious?
DH got his fistula in March, it is just now barely coming along. the head nurse is doing it all for him. doing good job too.
now though, looks like his old and new permacath sites are infected. getting vanco and fortaz in the lines. doc will look at wednesday to see if needs replaced or we can wait?

our training nurse comes at noon today. to check out drain and outlet. she was our PD nurse. i made her a little basket of goodies and will have sloppy joes for lunch. she's a hoot. has 4 children under 7.
shes been a huge help. says we shouldn't have any problems with medical part. i'm looking forward to whatever ideas she can give us.
we start our HH training Monday. so this is our last week at the clinic.

my feet are hurting as it appears i have developed bone spurs in my heels from all the driving, pushing heels on floor of car. too much on my feet. so i am looking forward to being able to get away from all this driving soon.

ok, lets keep eachother updated on progress. there are a few others at clinic watching our progress as well to see if they might be able to do HH too.
Lets Do It!

[The Noob]

our training nurse just left. we had a grand time! had lunch, petted the puppies (think we have her talked into taking one). she gave us good suggestions but happy with our set up. she had a list to go by but nothing spooky.
most we already knew. plus she gave us a good tutorial on the machine and so on. we had a good time and feel much more encouraged. her husband is a resident (soon to be doctor) so they will be moving within next year for him to finish up. we will miss her. she was our PD nurse. it was a good day. we start training Monday. all is well.

[willowtreewren]

 

I'm so glad this is moving along! Good for you!

Aleta

[vcarmody]

Good luck with your training.  I remember how excited I was... then scared, then overwhelmed.... it was all worth it in the end!!   Keep us updated on your progress.   

[boswife]

it is all so very exciting!!  im happy it's moving along for you.  you  sound so confident which is huge in this. ( though........ even the very VERY scared ones have made it and gone on to love it.    ME included )  It's so neat to watch someone else in thier beginnings.. 

[The Noob]

LOL well i am trying to stay positive. what we have going for us is some medical training, but this is still a new territory! i just tell myself i will do it. and think of the long drives to clinic and the hope this will be better for DH.
but believe me, i could listen to you pro's all day. and i believe i will be checking in with questions.

due to the last 3 years of driving, stress, and too much work, i have ruptured the tendons on my feet and now have heel spurs. great. my DH is amazed and grateful i am willing to do this with no paycheck, no insurance, or benefits.
i tell him it will look good on a resume, and paycheck/benefits will be him feeling good and no more driving! man think of the gas money we will save! his Doc came in today, the young one, he's a real hoot. told him it was a good choice and much better for him.

i am really looking forward to seeing the change. our nurse said it might take a week or so to see it. but his labs are excellent now. i am looking into the extended. because of the pro's here saying more solids are taken off that way. and easier on fistula? right? he is using 16's now. its going well. i'm sure the clinic cannot wait to get us out of there. i'm concerned with what will happen to the support group. but, i did what i could.

our nurse said that the man who worked for Baxter and helped designed the PD cycler, went to work for Nxstage, so helped to design the System One, hence if you've ever used the PD cycler, you will be somewhat familar with the Nxstage. anyone else heard that? i thought that was interesting.

anyway, soon hopefully i will be reporting that we are done, at home, and all is going well. thank you all so much for your support! there are some very good peeps here. some nasty ones here and there but there always are everywhere. i focus on the winners..which would be you. 

[looneytunes]

Noob...I'm so excited for you.  You will find the NxStage to be very user friendly.  And, yes, it may be a little overwhelming at first.  We have been using it for 18 months and by now we have made about every mistake that can be made and it's all turned out ok.  One of the best though was just a few days ago.   We were both very tired from a long day working outside...hubby set up the machine for treatment and I set up the supplies.  After hooking him up and about 45 minutes into treatment, he noticed the saline bag ballooning to huge proportions.....he had forgotten to hook the drain line up and so the urea was going up into the saline bag.  It's a wonder it didn't explode!      Since both of you have EMT backgrounds, I can imagine the first few runs on your own....DH saying "did you check ..." and you saying "of course!" and so on....

When we first started, there were some folks here on IHD who were invaluable to me...always available (day or night) to answer questions.  So, jump in with confidence and remember, we're all out here willing to help if you need us.   

[boswife]

Awwww loony, i did that one after only 6 months in...lol  Does that make me faster than you..     Ohhhhhhh i didnt like it at all!!!!  I do hear that's one of the most called in err's... It was my one call that i wasnt calm and collected.. I was SCARRED!!!!  and even that turns out ok   

[The Noob]

thank you ladies! well, we start training next Monday. i kind of foresaw this happening: all of a sudden everyone is calling, placing demands and requests on us right before we got into this.
we got home after long day yesterday, i went to bed at 4pm and slept till 5 am. i needed that. i'm working hard to get everything settled and set up so we can do the training as unhampered as possible.
my cousin called very frantic to say they want me to leave here and come there (from MI to SC:900 miles each way) to stay indefinetly to help with care of Grandma and brother. brother been in and out the hospital alot in last month. she is exhausted. needs help. i do understand. i sure do. been there many times. exhausted, needed help, none coming, dug in heels and got it done.
we have no extra money to hire help, they do. there is other family there within 1/2 hour of them but they are unwilling to help. no one wants to give up their life to help out. i do feel for them. but what part of Home Hemo does everyone not understand? i cannot leave my husband to fend for himself. they all know we are getting ready to start this. he has been in hospital over 30 times, not to mention all the docs, tests, procedures, appts., so i can sure relate!

ok i'm just venting. what we found out when we got on this roller coaster, is that we are all there is, and we better find a way to cope. its a harsh reality. if we were going to stay where we are, we better come up with a way to do it. i do feel for them, i do. and if we weren't in this spot, i'd be there to help out. but we can't.

[willowtreewren]

You are going to do just great. Yes, yes, there is a steep learning curve at first, but you are way ahead of the game!

We swore that WE would not EVER forget to disconnect the drain line from the saline bag. And we did NOT do it ONCE!

Nope, we did it twice.

 

You will make mistakes. Accept that and just take care of them. If the manual isn't enough help, call tech support! They are great!

 

Aleta

[cattlekid]

Just got done with my home visit.  Passed with flying colors.  Just have to switch out the outlet in the basement for a GFI outlet.  We have an electrician friend so it should be a piece of cake.  Will have to start cleaning out the basement closet to fill up with supplies.  Will also have to sign up for an eFax number as I declined the fax machine.  Why burden myself with extra technology, esp. because I do not have a land line. 

Two more weeks!!!   

[The Noob]

aren't you pumped! let the stress begin!

we didn't have to do the GFI plug, and can scan the flow sheet and attach to email. don't know if that was option for you? we are 10 miles from town, not going to town every day to fax. only use cell phones, fax would be money. what is an efax?

we're trying to get the rest of things settled here this weekend as we start monday. lets keep eachother updated!
i wish others at clinic could do this. so much better treatment, no driving, sit in the chair and eat, watch tv, in your underwear even..LOL

[cattlekid]

eFax used to be a free service that would allow you to send faxes through the Internet.  However, I see that it is no longer free.  I think I'll try the scan and email since my nurse uses eFax anyhow which sends faxes to an email address.   If it just "has" to be a fax, I did find another free service.

I'm surprisingly not feeling too stressed about things yet.  The most stress I think will be cleaning out the closet I am going to use for my supplies.  I think I need to have a garage sale.   

[The Noob]

cattlekid, i am so sorry, i read some of my replies, and they don't sound very friendly. i am so sorry, its been a hectic few weeks here, and i wanted to jump on real quick and offer encouragement and trade stories. geesh..talk about a busy few weeks. please forgive me. 

this is the last weekend before we start the training. our drive will be 1.5 hrs each way, with about 5 hours training in between. my sons truck we used to haul hay has a ripped tire. we'll have to get out today and change it. then go get 20 bales of hay. put in rest of groceries, stack the rest of the wood on porch as its cold, rainy and windy. take laundry to town. need to go to other property and do some winterizing. don't ask me how we will get it all done. at some point i need to rest. i have heel spurs in both feet now and back is yelling at me. our nurse, whom we both love dearly, wants to come out with her family this weekend to visit and see the new puppies to choose one. i'm feeling a tad overwhelmed and we're not even started yet! LOL

we have a printer with a scan option, she says we can just scan the flow sheet and attach it to email. she's been great. trying to save us money. the flow sheets are for her to put in so the clinic gets paid. her husband is in his residency to become a doctor and she has 4 children under 7, so i know we aren't the only ones stressed..LOL..
we have hi speed internet on our landline, but can only use the landline to call 911 or get calls in, this saves money. we use our cells. using a fax would rack up the bill which we can't do. this is why the email.
son and i have most done here with the move and well, the rest will just have to wait.

ok deep breath, coffee..we'll get through it. please keep me updated? we will be using bags as we don't plan to do this for too long. she says it will be about 60 boxes a month but they are smaller. all we have is a old lazy boy to use, it will have to do. i have a large area in one corner of downstairs cleared out to use. its one open room. i did get all the windows downstairs taped up and still need to do the upstairs. i keep reminding myself that this is the best treatment for DH and we won't have the long drives/days at clinic during the winter.

did i tell you that our nurse told us, the man who helped designed the PD cycler for baxter, went to work for Nxstage and helped to design the Nxstage one, so there are similarities, which helps as we had the cycler before. thought that was interesting. the cartridges are similar to the cycler.
ok just rambling.  and lets keep each other updated.

[lmunchkin]

You guys who are starting NxStage whether "extended or not" will be so glad that you did.  Noob, that is exactly what we enjoy about this machine, the not traveling to clinic, the eating, watching TV and yes, in our underware! Lol.  It is just a whole different experience, and one that we prefer!
 And you will find traveling more doable with nxstage. You can carry it where ever you want.  Just spent 2 weeks vacation, and honestly, no problems what so ever!  We had the van full of his medical needs, but hey, we got it done, and had a great time to boot!

Like Looney & Boswife, it is overwhelming, but as time goes on you will find it far more easier to do.  It definately is user friendly, heck, it had to be or else I couldnt do it! 

I really enjoy reading all the experiences you guys are having, brings back memories!

Keep posting girls & guys!

lmunchkin   

[The Noob]

thank you girlfriend!
well, we got the tire changed. and most of all else done. get hay today. trying to get it all set up so don't have too many surprises during training. had already put money aside for the 2 weeks or so for this training. gas and all.
the wind was awful yesterday, gusts over 50mph all day. i am so ready to get this done and over. i bought some heel cushions for my shoes. i am most interested to see if DH feels better with the daily treatments? he is looking forward to not feeling trapped at the clinic. our nurse will have the machine delivered to clinic and we will take it home from there. UPS just drops and runs. it weighs 75 lbs right? what did you put yours on? i am thinking heavy wood end table? would that do it?