New and Nervous

[kimberlyn50]

Hello Everyone, well, I been reading here for weeks and weeks, and here I am.  My boyfriend started Dialysis this past September, and our experiences at the Center has been less than pleasurable.  We recently finished NxStage Training, and were to embark on our own at home this past Mon.  Rising above the nerves we both had were a feat in itself.  While in training, I performed his cannulation perfectly, he has a Fistula.  Never missed....as soon as we got home, missed everytime.   Then, we had an infiltrate.  This has pushed our nerves over the edge, I figure its normal to have some jitters, but this one is tough.  The other thing is I work fulltime days, come home, get the machine priming, eat a (fast) supper, then snap n tap the darn lines (takes forever), get him on the machine, finish by 10 o'clock pm, off to bed..just to start over.  We had no idea the time it would comsume.  As my boyfriend said, we had more free time at the Clinic.....we have this weekend do make a decision which way to go....I could use some advice.....boy its so tough........looking forward to meeting some new friends on here........thanks for listening lol

[Scarlet]

Welcome Kimberlyn50, it is great that you found us.  This site is a great place for the lovedones of those of us struggling with this illness.  You will find loads of support and NO JUDGEMENT.  Always remember that youare entitled to all of your feelings, even the not so much fun or nice ones. 

We are all human, do not EVER berate yourself for feeling overwhelmed by all of this. We all are.  Be proud that you have chosen to help your boyfriend, not everyone is cut out to be part of this life.

it will get easier as you become more confident in what you are doing. 

The folks on this site are always open for talking and assistance.

Welcome!!

[paul.karen]

Hello and welcome to IHD.

It does get easier with time.
YOu mention that you work fulltime and then you prime and set everything up.
Just curious why your BF doesnt set it up before you even get home?
I do PD so i cant really help with any NXStage4 questions but many here do Nxstage and seem to love it.

Glad you both found us.

[kimberlyn50]

Hi there!

My boyfriend is visually impaired, he can't see air bubbles in the lines.......I'm really hoping to make some good connections on here.......thank you for  your encouragement...

[cdwbrooklyn]

Hi Kimberlyn50,

I've just started Nxstage myself almost two months ago.  Yes, you are right, it does take a lot of your time however in the long run the benefits are worth it.  I've said the same thing when I first started about being in-center vs. home.  Nonetheless, I took another turn and started to do it early, early in the morning starting at 2:15am and finishing by 6:30am if the machine doesn't alarm or my arterial buttonhole doesn't clot.  Anyhoo, I found that this method works well for me whereas I don't have to think about D until the next early morning.   It was a little hard at first getting up at 2:15am but after a couple of treatments, it became routine and its really work well for me.   Maybe you and your Bo can try that to see if it works for you guys.  The trick is to make the machine work around your schedule. 

Also, at home, your Bo is in a different position from training.  You have to find where the vessel is located now that your Bo is in a different position.  What helps is you can use a turnakit (sp?) so the vessel can pop up.  Look where the vessel is located and stick the needle toward the vessel.  If you are getting resistance, you are at the flap of the vessel.  Push the needle a little bit harder and you will go right in the vessel.  That is your angle.  Also, don't fish around in the vessel.  Pull the needle more than half way out and position the needle but don't let the needle come all the way out, and go in again going toward the popped vein (vessel).   

Hope this helps a little bit.   

[vcarmody]

Hi Kimberlyn50,
I felt the same way when we first came home.  I was a bundle of nerves, had a hard time putting the needles in and it took so much time.  I was so overwhelmed, but then I seen how much better my husband started feeling.  I really felt that the center damn near killed him every time he went in.  He would cramp, bottom out, vomit and feel like hell for like a whole day.  Now he feels great, hardly ever cramps and has so much energy to enjoy life when he is not on his machine that it makes it all worth it.  We basically do what we need to do all day, work, clean. shop, doctors and then when were ready to settle down for the night and dinner we start.  After I put him on I'll make dinner, then we eat while we watch TV (which is exactly what we used to do). Sometimes it is a sacrifice but then I look at all the things we have gotten to do that we would have never been able to do when he was in center.  So far in less then a year we have been on 3 vacations, two cruise and a trip to Atlantic City, we are going on our third cruise in March and he has only been on Nxstage for 1 year.  You have to do what you think is best for you.  Do you have anyone that can help out by setting up his machine before you arrive home?  I hope it all works out for you.   

[kimberlyn50]

Thanks everyone for sharing, what kind of schedules do some of you go by, every day, every other day?  5 days, weekends off?  I am interested to hear.  Also, I am concerned over alarms on the NxStage machine, is it pretty smooth, or nerve wracking?  Any tips on a quicker snap n tap?  Seems to take me 30-45 minutes, I've seen others do it in 15 minnutes? I'd love that!!!  Have a great night everyone!!  I'm so glad I joined IHD....

[silverhead]

30 to 45 minutes? I can't believe it.  Are you doing this while the machine is in circulation? , I always did the snap and tap just before cannulation and the machine was in stop mode, never took more than a couple of minutes to do. And don't worry about  some "micro" bubbles in the line, they won't hurt anything......
Tom

[willowtreewren]

We do six days/week. If something comes up that we need to do on a night that we usually have dialysis, we usually rearrange our schedule. We have gone as long as 10 nights straight of dialysis without a night off. We would rather do more than less. BUT, like next week we will have 3 days on and then one day off because we are doing a 15 hour drive. We will visit with our daughter for 5 days (doing dialysis then) and follow those 5 days with a day off in order to drive the 15 hours back home again.

Regarding snap and tap, if you get rough with the lines (and especially turn that cartridge on its head several times) you can get the air out in about 5 minutes.

Alarms: at first they are rather un-nerving. BUT the machine is rather idiot proof. That is why it has those alarms. They are usually from user error. Any more when I hear an alarm my reaction is What the heck did I do wrong THIS time? Like when I forget to put the parameters into the machine, it pretty much says, you dummy, what am I supposed to do?? Ding ding ding. Or if I forget to unclamp the lines, it says, DUH! nothing is going through, take care of it, please. Ding ding ding. Or if hubby accidentally kinks a line it says quit moving around so much. Ding ding ding. And if you can't clear an alarm there is the helpful tech support crew who will walk you through just about any fix (like unclamping the waste line) and they do NOT use the word dummy, although I hear it echoing in my head.

When we started this NxStage journey I never dreamed it would become so routine, but it did. I love that little machine and even put my arms around it an give it a heartfelt hug every now and then. Its hum in the evenings is reassuring and my husband and I spend many wonderful hours together while he is having his treatment.

Aleta

[boswife]

I love your post Willow..  I read it to my hubby and he said..........THATS what were looken for :-)  So thanks!

[willowtreewren]

Just telling it like it is. And don't think there won't be days that you just wonder why it's up to YOU to have to do all this stuff. It just is. So make lemonade or go thirsty. Better to have lemonade.

 

[boswife]

right on Aleta,,,  and,,ya made me laugh cause i already  wonder that about our life NOW, so cant wait to have someore     

[kimberlyn50]

Wow, sounds like maybe I'm just too picky when it comes to getting air out of the lines........we are hoping to make a decision by tomorrow on home or in-center.  The reason the deadline of decidint tomorrow is the center is holding his spot...and they have a waiting list to get in. I'm leaning towards giving it a month, I am so nervous about cannulating, we've started buttonholes but they are not quite there yet.  I just don't know, one minute I feel ya! we can do this, then it's well, the nerves take over.   Its so strange to me because I am not a nervous person in any way, but this one scares me....maybe I'm just pscyhing myself and him out......our training nurse gave us a phone number to a couple in my town who have been doing it for 3 yrs at home, so we called, and SHE (caretaker)works at a Dialysis Center for a living.......how was that supposed to make me feel better!!!!  Of course it was a breeze for her....what about us average everyday people that this has been put upon us........I dunno........feeling very confused and probably not making much sense here.........

Thank you to everyone who has written...I so enjoy hearing your experiences, gives me alot to think about in weighing everything.....have a great day all!

[willowtreewren]

Good luck with whichever direction you decide to take. I do think it is wise to give it a month, though. Spots come open at clinics if you change your mind.

When we started doing NxStage sticking my husband made my stomach lurch. 

It is soooo routine now that I hardly think about it.

I would never tell you that we don't feel the pinch of time. We do. Once I groused that dialysis took 4 hours of our day every day. My dear husband reminded me that in fact, it gave him 20 hours a day that he wouldn't have. Reality check.

Anyway, we will be thinking of you.

Aleta

[molldw]

It'll get better, I've been sticking myself since we started.  Actually I started sticking myself in the clinic before we even started training.  It is so much easier to stick yourself than to have someone else do it.  Has he considered sticking himself?

[Desert Dancer]

Hi, Kimberlyn! My husband and I don't do NXstage, but we do dialyze at home with a Fresenius machine. I just want to let you know that it DOES get easier!  We sort of viewed our first month home as the 'shakedown cruise', to use nautical terminology. Everything that could go wrong, did go wrong that first month and 10 times out of 10 it was just me making silly mistakes that I would have made my first week of training (clamps open that should have been closed and vice versa). Boy, was hubby rattled the first week home! But then we just realized that every time the machine alarmed and we figured out what was wrong, it was just one more lesson learned that we'd never have to learn again; you generally only make the same mistake once. And sure enough the alarms got fewer and fewer - and our confidence grew and grew - until now it's so routine we can do it in our sleep (actually, we do).

I always hear NXstage users complain about the amount of time it takes to set up; does it really take four hours?? I couldn't imagine doing that 5 or 6 days a week. It only takes hubby and I an hour from start to finish; have you thought about modalities other than NXstage?

Has your hubby thought about cannulating himself, or is he unable due to his eyesight? It's so much easier, as he would be able to 'feel' his way in a way you cannot. Even if he can't, that will get easier for you, too. Many times the problem is simply coming home, as he may not be holding his arm in the same position for cannulation as he did in-center and thus his fistula would be in a different position as well. Just being a little off can make a big difference.

Whatever you decide to do, good luck! 

[boswife]

how are you guys doing now kim?

[lawphi]

Kim:  We brought our machine home a whole week before you.  It does get easier and faster with each day.  My husband has button holes and sticks himself.

There is a great snap and tap thread regarding priming at 23 for an hour or so and doing a third round of snap and tap.  I have found that really works for the microbubbles.  I also find it helpful to put the pod in between my fingers and clap.

It takes us half an hour to set up, 2 and a half for treatment, ten minutes to get him off and he cleans up.  He was essentially catatonic post in center treatment and would sleep all afternoon.  His levels have improved drastically compared to in center and he may only have to do five days a week. 

[kimberlyn50]

Hey Everyone...sorry I haven't been on here in a while.   Things are going great back here at home.  The nerves have left, and HD has just become routine...we do 2 days on 1 day off......Urban (my boyfriend) is feeling SO much better.  Haven't had any problems.........his buttonholes tend to want to start closing up on out day off (he heals quite quickly for a Diabetic); I find that if I don't let myself think about cannulating him, I don't get nervous.  So taking the month off while he went back to Center and I took some anxiety meds just to get me over the hump (am off now).....and LOTS of prayer for strength and guidance.......we are doing it!!  Still complaining about snap n tap......Urban can't set up before I get home, I get there around 5:30; set to prime, eat supper; then snap away, we usually get him on by 6:39 or so,,,,wish it were earlier, but it is what it is,,,,,,,

Boswife.....how is it all going for you??  Been thinking and praying things are going well for you!!

Desert Dancer.....he is unable to cannulate himself due to vision and neuropathy in his hands don't allow him to feel much of anything.....but I find that I can 'feel' my way in much easier now.

[willowtreewren]

Hi, Kimberlyn,
We used to get home form work around 5:30- 5:45. I would get dinner going, get things set up, get Carl on the machine and then serve him dinner during his treatment. It allowed us to get to bed at a reasonable hour so we could get up and start the day at our regular "unreasonable" hour of 6:00 AM.

I don't know how long your treatments run, but we were regularly doing 3 hours of machine time. If I cannulated him at 6:15 plus or minus, we could finish up by 9:30 and get to bed by 10:00. 

We figured this out after hearing another NxStage couple who weren't able to start until getting home at 7:00 PM and were up until midnight some nights. I knew we couldn't do that! LOL!

Aleta

[boswife]

Hi kim,,, you could have just about written my same story..      The nerves were what got me and got me good!!  I was taking rescue remedy and praying like i havent prayed in a long time..  Thank God for intervention because it sounds like you and i both had some crap to get through!!   now that they have FINALLY passed, i look at it all so differently.  Yea, i still am not fond of cannulating, but the 'feel' is certainly there and if i even start to 'go there' with my thoughts, i turn and walk away and refuse them.  What was weard to me was that i would look at each step and shake! Im not a shaker,  lol so i have no idea why this happened..  I tell ya,   snap and tapp....how scarry can that be..lol   putting in parimiters,,, oh, that was quite the fearful thing,,  It got to be that no matter wheather i was   tearing tape, putting supplies, or what ever, i woud start to burn up inside..  YUCK,,,, no more talk of that,,  We run beautiful smooth, slow treatments and relax, eat, do laundry, brush dogs, watch tv  what ever, and wonder how on earth i made so much of it...  Im very happy for both you and I that we made it through..  So good to hear from you.. Bless you, and !!!!!!  your so lucky about 2 on one off.  WE're hopping for a change from 6 on one off...     His numbers are great so we shall see...

[lmunchkin]

Hello to all. Lmunchkin here & my first post to site since my membership.  I totally agree to nerves.  The first week at home I thought to myself, "WTH am I doing".  That was in June 2010!  7mths in and its like wow what was soooo hard about it. I told his neph. that we were going to do 3 on & 1 off.  (Make a 3 day batch & use it up then off a day). His numbers are great so far and we are thankful for that.  If neph wants us to do extra, then we will. As time goes on, it gets easier to learn and I love the challenge.  Those who are new to Nxstage, hang in there, it does and will get easier!

[kimberlyn50]

lmunchkin....glad to hear from you!  We have been back home just over a month now, and I too wonder what was all the fuss......now it feels like routine...we just do it!   I have found that if I think about it for any length of time...the nerves try to raise its ugly head...so...I change what I'm thinking and everything goes smooth as can be........I do have to say...and enjoying (yes enjoying) taking care of Urban, and seeing how good he feels and mostly how it affects his emotional state in such a good way, makes a horrible situation bearable.........maybe one day he'll get the call as so many others have.......for now...we'll just keep on keepin on......

[boswife]

oh my gosh you two,,,, My exact words as of late.  I was just talkig to a couple who are going to start training in a couple of weeks for nxS.  I was telling  them how i let it kick my butt and for nothing!!!   What was the big fuss!...  It's amazing huh!!!  I too  have to keep my mind straight, as if I 'think' too much about some things, i can get myself in a bad place but that too is just my own personal issue, and i have pretty much won that battle.  Im very proud of us!!  All of us who have conqurered our fears to help our loved ones.   And those patients who have been able to do it all on their own!!  i certainly commend you for your bravery and courage!