Our First Day of Training on Nxstage

[The Noob]

well we are back home after our first day of training and man am i wiped out.

ok, i was right, it was the driving that will be the hard part. the training went great and i did some of it after an hour or 2. we have an awesome nurse! she will let us do it all ourselves tomorrow. i bet my DH we can get this in 10 days or less.
the machine is very user friendly, like everyone says. you read all about it on the net but when you are actually standing in front of it, it clicks.
its not that big beast i was afraid of. i've seen little kids work a vcr or computer before they can even talk. to me this is same thing.
our nurse walked us through it, the manual tells you every step, and i mean ever step.

we had several alarms #23 arterial as well as #24 venous, DH was starting to clot and we knew after the second alarm what was happening. after watching nurse a few times, i just got up and started doing it. she was a tremendous guide! i wasn't afraid at all.
she did the cannulation, but i will do it tomorrow as DH sites are too low just yet for him to do so.
every 30 mins the machine cycles down, it makes a noise, thats your cue to hit the button on the BP machine. write it on flow sheet.
his initial dose of heparin was 2, so we'll try 4 tomorrow, may even out at 3.

he ran for 4 hours as he was overloaded. he ran 25 liters, at 350 speed, took off 4.2.
do i have that right? he feels great! (maybe it was 35 liters?)

i learned how to spike the saline and do the rinse back. we will do labs on friday and use the centrifuge then. we used 5 bags. there must be a way to hang them easier?

if you have some common sense and are determined, this is so user-doable.
i have to praise the lord for the people who created this.

i thought our medical training would be useful, but after today i don't think that mattered. it was just common sense. if you ever programmed a microwave or learned how to do something else you were wary of, you can do this. just take your time, follow the instructions. i found it all fascinating. this has to be the best treatment out there, hands down.

i got an hour off to go get lunch for us and as i figured, its the driving to and from that will be the hard part.

i just want to thank any and all who encouraged this for us and wish i'd had the energy to consider it before now. when we're home it will be so nice!!!!
  to all.

[willowtreewren]

So good to hear your "report" Noob! 

You'll take to it like a duck to water. 

Congrats!

Aleta

[cattlekid]

Awesome!  I figure since I work in IT, the machine will be just like a big computer.  Can't wait to get started - six more incenter treatments before I am free!!

[MooseMom]

Oh, that's terrific to hear.  Gives me confidence!

[boswife]

So neat to hear!!  I love reading about others experiences.  I so wish that i had 'loved' our nurse. I mean, she was a neat lady, but besides having a language barrier, she had a real hard time accepting when she did something wrong, or was teaching something wrong so had me confused too many times to where i lost confidence way too early.  It sounds just perfect for you and im so happy.  BTW...... what did you do when he was clotting?  We dont use heperin and hasnt clotted, but i wonder if i'll know what to do if he does.. 

[lmunchkin]

I just knew it Noob!  Somehow I just knew you would love this as I do too!  Kudo's to you lady!  Now you will see big changes in your Husband and the way he feels.  I think you are seeing a big difference after one day, congratulations!

Boswife, there is a port up by the filter (kidney) that you can inject heparin in if he clots.  Do you have heparin?  I give 2 injections: At the start of treatment and an Hour in to treatment.

Noob, are you hanging 5 bags, or are you hanging 4 with 1 on the warmer?  If it is 5 bags, then it is 25L.  I know that my husbands prescription is 20L, using PureFlow, but sometimes (Not often), I will hang a bag to get extra fluid off if need be.  Like I say, that hardly ever happens!  There are going to be lots of different things you can do with this machine that will make him feel more comfortable too.

Im so happy for you and Him.  You guys been through alot and now, it is my belief, you will be so glad for this "Marvelous Machine".  It is SOOOO easy like you said!

lmunchkin   

[The Noob]

hey morning! DH says he feels the best he has since he ever started d! he is on all the sites reading all he can.
cattlekid and MM this is something you will love and take right to. i believe it. it is not the scary thing i was anxious over.
lets see, when he was clotting, we ran saline through the line, fixed it. nurse flushed with heparin when we first started, we will up the dose a little today.
we used 4 bags and one on the warmer. LOL i was beat from the driving last night so after i posted we went straight to bed. the machine has a slim warmer that sits on top, with velcro straps to hold the first bag. the rest of the dialysate cycles through that bag so is heated as it goes. it really is a wonder machine.

the only thing i'd changed is how to hang the bags. one goes on top, then the other 4 are hung intertwined on the iv pole. this would be difficult for some who may have hard time with the heavy bags and getting it just right on pole. i will see what nurse says today.
she really is great! we had such a time learning it all, she is very patient and we found it all fascinating. if you think of things you've had to do in life that were challenging, well i know we have done more difficult tasks.
this thing is so user-friendly. it doesn't look like a huge thing, though it is heavy.
there are 2 bags per box, plus the little bag of saline. we used half to prime, then more to flush when clotted, we needed to have enough to do the rinse back (return the blood in the lines and this only takes a couple minutes) so i spiked another saline bag. i didn't hang the bag first so poked the spike through it. no worries, just got another bag. i will be sure to hang it first today.
DH used to work on engines of all kinds and got a kick out of the thing "revving up"..its not loud it was just new.
now, in our training room the machine sits on a pureflow cabinet. it looks like a larger black file cabinet. attached at the sink with a small water line. about the size i want to say, of a medium sized end table. its too large for us to use in our small bathroom. but it doesn't look that difficult. though after reading reports peeps have had to write on issues with it, at this point we will just use the bags.

i've been laying here going through the steps and what supplies and so on. man someone will kick for me this for sure but i almost want to say this is easier in many ways than doing PD.

for any of you out there thinking you can't do this, our nurse said she trained a husband/wife in this who were 76 and 78. it took them 6-7 weeks but they got it. this is absolutely the best for D, and i am sure as they keep tweaking it, it will be even easier. oh why we didn't do this sooner? i was so burnt out and disgusted from the bad experiences we've been through i couldn't wrap my head around it then.

one thing, we have a great surgeon also. both DH V and A are shallow, run in same direction, we can feel it easily. just take your time, follow the directions, to me  it was like learning how to put in a pressure tank, run a wood stove, figure out whats wrong with a crying sick baby and what to do..LOL..seriously, you can do it. 

[The Noob]

pics of machine on table at training and DH and nurse being silly

just to add a few thoughts: lets say some of you have a tool shop, or a fancy kitchen. if your like me, your area is organized. you know where your "tools' are and how to use them. now, walk someone into that area who has limited knowledge about it. can you teach them how to use a screw gun, a compressor, change a tire, things like that, why its done, how its done. what to do if something doesn't work. maybe you want to bake a somewhat complicated recipe. you follow the directions, and after a few times, you might still have to look at the directions now and then, but you "get it". you know what "fold eggs into the flour" means, you know what "set the jack on a piece of wood first" means.
does that make sense? not trivializing it,  just saying don't be scared, the machine is not going to explode. there are a ton of safety stopgaps, the machine likes you, wants you to be confident, helps you every step of the way. the machine is your good friend.  *chuckle*

[The Noob]

forgive me, i keep coming back here to add things..

cattlekid, i tell ya, this is much easier than learning to program a computer. you will be amazed.
at the top of the machine in front, on one side are windows with constant readings. these are pressure readings for arterial, venous and flow, if i recall correctly. we wanted his pressures to stay at 250 or less. it gives  constant repetitive readings. another button on the front is a reading for current numbers. how much has been taken off, how much time to go, etc. you press it for a current reading and then after a few seconds it goes back to the settings. its like setting the timer on your microwave. you set the timer, then it goes back to the clock or original reading. if you want to see how much time is left, you just hit the timer button. it tells you, then reverts back.

DH hemoglobin is 13.3 right now, without epogen. we will do labs twice a month or when needed. nurse says draw it up, throw in fridge or in box (they supply) with coldpacks, call fedex, they come get. if he needs epogen, we will give it at home. just a little tiny needle. we did this on PD. took all of a couple mins start to finish. not difficult at all.

on the alarms: yellow button beeps. not ear piercing. thats your caution, like a traffic light. arterial reading is in red, if you don't fix it it shuts the flow off. you mute, press stop, fix the problem, hit the restart button.

the little dialyzor rests in a holder on the side. looks like a home water filter to me. fibers and all. its got blood flowing through it during treatment, when your all done and do the rinse back, it should be clear more or less. we saw the small clots in the top and a few on the bottom. hence today, once needles are in, we will flush with a little more heparin. you flush with a little saline too. my man, if you have ever bled a brake line, thats about right. nurse uses term "flush" or "prime". but we know it (are being on ambulance) as "bleed the lines", this is just opening the lines enough to let a few drips out, for air and so on.
once you understand the "whys", the rest of it just clicks. sorry to belabor this post but i am so relieved and amazed at how user friendly this is. that last week of in-center was irritating. wanting to get started, DH feeling like crap when he came out. we when we left training yesterday, he felt fantastic. he said he felt like he could walk miles. this is much gentler and better D. i am so excited to hear your reports so please post them!   

[willowtreewren]

I love the pics! 

You'll find when you get home that you will continually be improving the way you store things and lay them out to make the treatments more efficient.

 

Welcome to the world of NxStage!

Aleta

[MooseMom]

This is just fantastic!  Thanks so much for posting all of this!  I've already been in contact with my clinic and have told them I will want to do NxStage at home, so when it is time for me to start D, I'll start NxStage training immediately.  I never had any real doubts about our ability to learn how to do it, but I can't get enough of these success stories.

But the best part of all this is how well Mr. Noob is feeling!  You both must be ecstatic.  I bet he feels like he is getting his life back to some degree.  I remember how he suffered before, how unwell he was, so to hear about his improved health is just really, really wonderful.

Now, is he going to be doing daily home D, or do you think you two might eventually try out nocturnal/extended?  (Sorry if you've already answered this!)

[cattlekid]

Just got finished with my weekly status meeting with my supervisor.  They have approved my time off for the NxStage training - I don't have to take FMLA or use my vacation time.  They are just going to pay me for the time off with no problems.  I will be working 8-12 each day and starting training at 1 PM.

Have I ever told you all how much I love my company?  They ahve been so good to me throughout this whole process.   

[MooseMom]

Just got finished with my weekly status meeting with my supervisor.  They have approved my time off for the NxStage training - I don't have to take FMLA or use my vacation time.  They are just going to pay me for the time off with no problems.  I will be working 8-12 each day and starting training at 1 PM.

Have I ever told you all how much I love my company?  They ahve been so good to me throughout this whole process.   

Oh my god, that's a major battle you didn't have to fight!  What a lucky break for you.  It makes me feel really good to see that there is still some mercy and humanity out there, somewhere.

[lmunchkin]

Noob, you keep posting about your excitement!  It is worth bragging about!

lmunchkin

 

[The Noob]

LOL not trying to brag really, just give a birds eye view..

ok, 2nd day of training. we got there arly before nurse did. so we set everything up that we could. we were ready to go with flow sheet ready and all. she had to get the boxes, saline, and heparin and some needles. all else we'd set up. washed and ready.
i did all the set up of the machine all the way to the needles. i did the arterial first, didn;t get it, she got it. i did the venous and got it first try. we had some issues with it as the V pressure showed high on machine, so there we were all 3 of us huddled over this fistula. it was a hoot. she flipped the bevel upside down and moved it a little and it was fine after that all the way through. we ran at pump speed of 350, used 5 bags, took off 4.2 again, treatment was 4 hours. DH got antsy toward the end (who doesn't after so many hours?) so we quit 30 mins early. he feels amazing. he clotted in 5 mins. i did the snap and tap good. got the bags all hung. our nurse was right there to guide and i was determined to do it all, if i could. i got an hour off to go get lunch and rest.

the drive is the hard part. and there are homeless everywhere, peeps are rude, traffic is nuts. by the time we get done its rush hour. can't tell you how happy we are to get out of the city.

the first time i did things, i had to read the manual and ask questions. by the 3rd time, i started to remember what to do without that. we had a couple alarms but nothing serious, usually cause DH moved his arm.
its his turn tomorrow. he and i will do the set up together and he will try doing the needles. akward angle.
but there are tricks to use.

the hardest part of this is him having to sit so long. he gets antsy. nurse asked if he could take something for it. we opted not to, as this is temporary. he is sitting for like 6 hours. it would be hard on anyone. because we're running at a slower pump speed, maybe not pulling as much as clinic might, but he feels much better.
Ma is pooped. nurse wants us to go the whole 2 weeks training. we'll see. the gas is hurting a little. we also are hitting the thrift shops to find something to put the machine on. nurse showed us some really funny youtube videos on her phone so we all had some medicinal laughter.

last but not least, if i had known what i know now about all this 2 years ago, we would have went straight to home hemo. no PD or in center. thank you for all your support! 

[lmunchkin]

Yea, looking back, on our journey with D., I would have choosen Home Hemo instead of PD (and certainly not In-Center). Not that PD was a bad thing, its just we like taking showers and not having to worry about infections of cath. in PD and perm cath for hemo!  Fistula's may not be purdy, but they are most natural way of Dialysis.  Nothing fake, it is your veins tied together!

My husband gets antsy every now and then also.  I just simply tell him that the more fluid he takes in, the longer it takes to get off.  He understands that perfectly now.  The minute we take his wght and vitals pre-treatment, he pretty much knows whether he will be on a long time or not.

It will be much better for you both at home.  Cause the time seems to fly by much faster, because you have things to distract you!  Like each other, LOL.  You know the Tv is a big thing for us.  Right now, he is taking quite a bit off, but Noob, when he gets down to a managable weight, you can take .5 to l.5 everytime.  I normaly take .5 to 1.0 off, but I also run BFR 350-400, at a FF of 33 to 35%.  Takeing it off slower and longer.  Lots of times, he will have met his UF goal with some Dialysate left, I just let it run on out cause he has met his fluid removal but then it will be removing the toxins that have built up in his blood.  I never cut his D short, because of the toxins.  I basically try to get the fluid removal off within the first 2.5 hours and the remaining 1/2 to .45 minutes removing toxins.  It has him feeling better than he has felt in years.

I have got to be serious guys, when they amputated his right leg below the knee, it took more than just that from my husband! He was giving up! He felt hopeless and more importantly his spirit was broken.  He was grieving the loss of his limb and I fought like hell to bring him back. Those of you who have lost limb, KNOW exactly what Iam talking about.  But through prayer and persistence and NxStage, he is back and doing very well.

That is why I am so excited about this NxStage!  It not only gave him his life back, but mine as well.  It will for you who are starting to train with this little gem!  Noob is right!  Why had we not done this sooner?

lmunchkin   

[The Noob]

bless your heart lmunchkin, you are a fighter!

he is running at 35. for yall wondering, thats what you set the machine on. its all the numbers, but not hard at all.
now, he was all don with what we wanted to take off fluid wise. it was the solids left. i tried to do all i knew to get him through the last bit. i think he is still more fluid than he needs. man i am trying to wake up, this driving is a bear.
Mom, we hope to only have to do this for a short while so just doing the tx;s at our own time. if it was long term i would push for the extended. i won't lie, its a long day for us at training. 1.5 hrs drive, get there about 11 and out around 5. then back home. son keeps it all going here and we do a little when we get home and hit the sack.

i promised him once this was over, we will have a hotel room for a night with a pool. he is a good man, but has ADHD i'm sure. LOL..hard to sit still.
we get the weekend off and next tuesday, which is when we get the machine i think.

lmunchkin, what do you put your machine on? we're looking around. something very sturdy with wheels i am thinking?
ok more coffee and get going.  to everyone!

ps: question on flow sheets. i had read everyone just putting down BP, vitals. but the one i'm working with needs alot more than that. i have to record the BP/P, plus all the numbers on the machine every 30 mins, plus heparin dose, all kinds of stuff. i wrote everything on it i could think to answer first when we got ready for the day, then keep adding to it as we go. nurse says alot of it will be pre-printed. is this right?

[The Noob]

3rd day of training. we got there early, nurse was ready for us. DH did it all today with just a few "uh huh's' from me from sheet. he had the machine ready start to finish to prime 7 mins. not rushing. did his needles, one second each, perfect placement, no alarms whole treatment. water heater kept shutting off but no other issues.
tomorrow we learn how to draw labs and go over complications. i think we are going to set a record or something..LOL
just update for any who read. we will also get our machine wednesday. have 2 more days then weekend off. then M/W/TH/FR we're done. nurse comes home with us friday. all is good! thank you for your support! we were done and leaving the city at 2:45. we had gotten in at 9:30, on at 10:30. i went to do laundry for an hour.

[Bill Peckham]

Awesome
 

[The Noob]

well, day 4 of training and we had our first real complication. DH got the needles in fine, he didn't feel good today and low BP. not a couple minutes later venous blew. there was small droplets of blood spray and a bit where it was coming out. we got it plugged. its a new fistual (5 months now i thin but just started using it 3-4 weeks ago). Nurse was scrambling to shut it all down while he held pressure. i was the gopher. the arterial didn't look too good either, so we ended up flushing the catheter and using that instead. i'm glad this happened there where she was present to help us. the venous is slightly infiltrated but not bad. but we'll rest if tomorrow and use cath. then we have the weekend off and 4 days train next week. i really need a visual manual, not just the big book. Nurse says she has a Nxstage one she will give us. I kept going over and over in my head what she did and how/what we would do at home for it. Doc already agreed to have us train using cath as well as fistula. Today was the first day i felt overwhelmed.

ps: what to do with all the spaghetti lines? geesh oh petes.
we found out something about a patient who is going through same transplant center we are. she had both daughters who were a match, then all of sudden they aren't? no reason given. on top of this they have made her do 4 mamograms, one right after the other. not sure why as nothing shows. why not just do a biopsy if they are worried? everyone we've spoke to using this transplant center is having the same problems.

[lmunchkin]

lmunchkin, what do you put your machine on? we're looking around. something very sturdy with wheels i am thinking?
ok more coffee and get going.  to everyone!

ps: question on flow sheets. i had read everyone just putting down BP, vitals. but the one i'm working with needs alot more than that. i have to record the BP/P, plus all the numbers on the machine every 30 mins, plus heparin dose, all kinds of stuff. i wrote everything on it i could think to answer first when we got ready for the day, then keep adding to it as we go. nurse says alot of it will be pre-printed. is this right?

We have the Pureflow Cabinet to sit it on, but while in FLa, we just placed cycler on top of sturdy end table.  Since you are going with bags only, it would probably be good to set on a table with wheels, but you can lock the wheels too.  Don't want the base you sit it on to move around while working on D.
Yes, you will have print outs of the flow sheet and yes, it is good policy to monitor every 30 mins.  I did that starting out till I got comfortable with it all and now I just fill it out every hour.  Since you are still training, just do it until you feel comfortable with it.  And definately until you are doing it at home without eyes watching.  I think for the first 2mths after we got home, I did it like clock work, but over time, I would miss my next monitoring and started slacking off, I just did it every hour to 1.5.  As long as everything is running smoothly, I dont feel it is necessary to do it every 30 min.
The nurse that trained me said that it is not mandatory to do it every 30 min., unless reaccuring problems, in which of course you would want to keep an eye on.  But while you are still training, I would do it.  You are doing good Noob!  You are the fighter here!!!

well, day 4 of training and we had our first real complication. DH got the needles in fine, he didn't feel good today and low BP. not a couple minutes later venous blew. there was small droplets of blood spray and a bit where it was coming out. we got it plugged. its a new fistual (5 months now i thin but just started using it 3-4 weeks ago). Nurse was scrambling to shut it all down while he held pressure. i was the gopher. the arterial didn't look too good either, so we ended up flushing the catheter and using that instead. i'm glad this happened there where she was present to help us. the venous is slightly infiltrated but not bad. but we'll rest if tomorrow and use cath. then we have the weekend off and 4 days train next week. i really need a visual manual, not just the big book. Nurse says she has a Nxstage one she will give us. I kept going over and over in my head what she did and how/what we would do at home for it. Doc already agreed to have us train using cath as well as fistula. Today was the first day i felt overwhelmed.

Can't help you there cause J. fistula was already established in center.  But Noob, tomorrow ask nurse what you all had his BFR on when fistula blew.  Since it is new and maturing, it is best not to do too high a blood flow rate.  It is good that he has a cath still for ER back up.  Hope it goes well for you both next time. Don't give up on the fistula though.  VS may have to go in and tie off some veins like what my J did, but it works beautifully. Thank God.  Just what, another week or so and you will have done it girl!  Your patience is paying off, and how neat that your son helps out soooo much! You are blessed, Noob.

lmunchkin   

[MooseMom]

Good, I'm glad you've had your first "overwhelmed" day.  You survived, didn't you!  And so did your hubby!  There WILL be obstacles along the way.  There always is when mechanical devices are concerned.  But you are one of the most resourceful people I know, and I am confident that you and Mr. Noob with cope with whatever weird and wonderful thing NxStage can throw at you.  I am sure that this will not be the only time you feel overwhelmed.  It's, all in all, a pretty overwhelming thing, dialyzing someone at home.

[The Noob]

well, what happened is DH had the needles in fine, all running smoothly. nurse was rushing between 2 patients, came in and upped the pressure too quick. the pressures climbed too fast, she pulled needle a little and flipped, thats when it blew and infiltrated. he told me he knew what happened. he's been doing needles for over 20 years.
so this is a biggie. increase pressures slowly. i want to do more so we can learn more. not just watch.

we did the labs yesterday and that is not hard at all. just a couple steps, go slow. i think when we are home, in our own place, taking our time, it will go easier as we won't have the distractions and be rushed. if this was the worst that can happen, i think we can handle it. main thing was go slow on pressures, if this happens main thing is press stop, hold pressure, if get overwhelmed, quit. try again next day. or at least wait 8-12 hrs.

i would like him to start button holes as he is an expert cannulator. today we'll use the catheter. i will insist on he and i doing it. i learn better with a manual and visual and doing it myself.

all is forgiven though as nurse is taking 2 of the pups. 

the hardest part of this is the driving. and the city traffic and rude peeps.
when we got back to our county the other night, we stopped for gas. there was a big discussion going on at the gas station about a body being found at the town park. one man says to me, "murder-suicide"..i asked how many were involved..he says "one"..*chuckle* well we have Daryl and his other brother Daryl..what can i say? one thing like this every several years. they can't be expected to remember all the details..LOL

the one suggestion i would make to anyone getting ready to do this, is keep in mind your travel time. and make it clear not once, but several times, to all you know, what exactly you will be doing, so any demands, crisis, or whatever can wait till your done. its alot to learn and you will need your focus. thank you all for your support!
one of the Pro's here has sent me some cheat sheets, which will help greatly.
ok, one more cup of coffee then off to the races..

[lmunchkin]

Noob, if the cheat sheet is what Im thinking, girl, you will be doing it by experience in no time!  You are learning alot quicker than I, and I can pretty much do it off top of my head!

Yea, nurse taking on two at a time, is a bit harder!  I definately would forgive this one, but like you said, much rather do it myself, cause in the end you are the one who will have to do it.  I kind of figured it was a High BFR.  Heck, my husband has mature fistula & I never run his BFR hi.

You and Mr. Noob are awesome and soon gonna be more Awesomer once you are at home!  Another thing Noob when you get home, NxStage Tech Support is Super Fantastic!!!  They specialize in this stuff and know anything & everything there is.  You will find them most helpful and they can tell you over the phone some things that " Nurse " can not tell you.  They are tech's but Nurse's held to a different standard, if you know what I mean!

You are Awesome and not much more "driving" left to do!

lmunchkin

 

[The Noob]

thank you  !

well, day 5..we did it all, set up to take down. went beautiful. vicky on here helped me last night and she had it right on. pressures too high too fast. i insisted that we do it ourselves and everyone out. we also got the book that gives all the detailed instructions with pics.
i did pre and post labs as well. he got his needles beautiful. then i kept the pressures low and increased very slowly. that did it and it went perfect! our son came with us and got to watch some. he is at brothers for weekend so we have a quite 2 days of rest. picked up a cart at thrift shop for the machine. we feel much more comfy with it now, it finally clicked. next week have 4 days train, we will do it all ourselves with no help unless needed. we have to, because we have to at home.
oh yes on TV thing, we have an antenna and also rent netflix dvds, DH likes a radio show he listens to.
there is one channel we like that has all old shows. our internet is not that fast, but i rent netflix dvd's.
told nurse i was going to text her to say i had a date with an xfiles..but thought it didn't sound right..LOL
i love xfiles series.
thank you again for all your support! there is a couple at clinic who want to do this also but have some mobility issues. they are trying to find way to hire someone. i hope they keep tweaking this so its even easier to use for people like this. it is night and day how good he feels.
when i saw my son in law today he told me he has appt next week to finish all labs as donor. wouldn't ya know? we will get home a few days or week and get a surgery date i bet. i am actually enjoying learning all this.
  to all of you!