Start my NxStage training in 3weeks. What to expect???

[Angiepkd]

Hi. I went to the neph today and my labs weren't so good. Down to 13% function, not really feeling terrible. Worst problem is being unable to sleep and some Restless Leg symptoms. My Doctor doesn't want me to be feeling bad while trying to learn how to do the home hemo, so it's off to DaVita for me. Luckily, the next class starts in 3 weeks, so I have some time to prepare myself and my house. Can anyone tell me what to expect? Will I feel better? Thanks for your help!

[amanda100wilson]

yes! yes!yes!  you will definately feel better.  you will find it a little daunting at first, there seems to be so much to remember, but it soon becomes familiar.  Highly recommend that you follow the NxStage manual step by step initially because it easy to miss a step.  also suggest making a bundle of pages of common emergency alarms that you can refer to when an alarm does come up.  I put my pages i to those plastic page protectors, and then held them together with a ring clip.

[Angiepkd]

Thanks Amanda! I appreciate the help. How bad is it making the button holes? I think I have a pretty high pain threshold, but those are some big needles! I am glad to at least have a plan, since the waiting in limbo really stinks! How many weeks did you have to train before being sent home? I am also wondering how much room the supplies take up? I cleaned out my coat closet for storage, but am concerned it may not be big enough? Thanks for the help!

[amanda100wilson]

It wasn't too bad. I used Emla Cream to numb the area.  however, I  have just had a new set of buttonholescand they didn't really hurt at all.  my training took four weeks.  the amount of space taken up depends on whether you will use bagged dialysate, or Pureflow.  the former takes up one wall of one of our spare rooms, the latter takes up far less space.  if you have a chpice, I would opt for Pureflow.  not only is it easier but the cabinet saves you getting a table to out the machine on.  i am rattling away here on the assumption that you ate goung to use NxStage.

[Angiepkd]

I am using NxStage, so your info really helps! I have another meeting with the DaVita team next Friday and will ask about the Emla cream. For some reason I think they use the PureFlow at my center, so that will improve my storage situation. I will try to get a copy of the manual so I can start studying and make copies of the alarm sections like you suggested. Thanks again!

[geoffcamp]

I have eyes on this tread!!  I am looking into NxStage now. Just got all the information and have an appointment with nephrologist next week to see if I can give it a try. My major issues are I live alone. I have people close to but would prefer to do it myself like I did PD on the cycler. I've been told and read to expect this to be an issue. Anyone do it by themselves or had someone trained and call when you go on and the after your finished??

[lmunchkin]

Angie, PureFlow is what we use and yes, less space is needed for the bags.  We have a 6 day supply of pre-mixed bags which fit nicely under a table sitting in spare bed room.  You can get a 3 day supply out of PFlow.  Like Amanda said, you can set Machine on top of PFlow cabinet.  Definately a space saver!  Once you get through the training (alot to know) and home on your own, it will start to "click" and you will be a Pro in no time.  It will be sooo worth the effort, believe me!!!  Keep us posted.

Geoff, if you could find a Retired friend to go with you to train for this, would be great!  There is a difference with hemo & PD. PD can be done alone with sanitary reasons.  All you do is connect yourself up and wallla, you D.  But with hemo, I think it is a little more involved, as you have to cannulate, make sure you are taped down securely, all with one hand.  I know there are several on here that do it themselves, but most have someone close, that will help if an Emergency.  The only other one I can think of is Meinke.  I may be wrong, but I think she trained on her own.  Now I don't know if she had temp cath or a fistula.  I learned alot from her "day by day" posts.  She was a Godsend to us.

What ever you do, never give up on your wishes.  You have a right!  Some one some where will listen!

Good luck guys,  I believe you both are making very good choices!!!!!

God Bless,
lmunchkin

[geoffcamp]

I have a central line cath and no foreseeable hope for a working fistula or graft. So I can't see how for me it would be that much different. But I have never seen it done so I'm not sure where the big difference lies between hemo with a cath (no needles) and PD. seems to me even if its a vastly different machine or set up the hook up is essentially the same.

[lmunchkin]

Well, in your case, you can use both hands to connect, those who have fistulas in their arms, can't very well do that.  They more or less use the one arm.  I can see them sticking with free arm with holding in hand of fistula arm the long tubes.  I don't know why with a cath in your upper body, why they couldnt let you do that?  I do understand though, having someone near incase of a "pop out of needle" to prevent you from bleeding to death.  You can't bleed to death on PD, and the cath in your chest, well Im not sure how that would pop out.  If anything is taped securely, it should not be a problem!

It seems to me, with your chest cath, it would be much easier for you, not having to needle everytime!  Interesting! Seems they would train you right away.  You are willing and eager, you are the perfect canidate!  I don't know Geoff.  Looks like you are going to have to demand it in some way! I see your dellemia (?) here.  Wish I had answers for you.

Good luck,
lmunchkin

[Angiepkd]

Thanks Imunchkin!  I am excited to give this a try, and especially to maybe feel better? I am afraid to get my hopes up, but really hoping to get back to my old self! Have you found that the need for blood pressure meds has decreased? I am currently on 4 different meds to control my BP and would love to cut back on them. 
Geoff, good luck getting to do the home hemo! My husband is going to be my main care partner, but my center said he will only be required to attend a few days of the training with me. Maybe see if you can get a friend to attend those few times and go from there? My dad had the central line for quite a while and from my understanding, the biggest concern was infection. In that regard I would think being at home and the only one handling everything would be a big plus. Hope you can do it!

[amanda100wilson]

I know several people who do dialysis on their own and were trained to do so.  I do everything myself even though my husband is in the house.  I cut him out of the equation very early on;  I prefer it that way. I was worried that resentment would build up over time.  Plus, I like to feel in control of my treatments.

[Angiepkd]

That is my plan, too. I think it will be better for me to be in control of my own health. I will have someone available if I need assistance, but I don't "plan" on needing help lol!  I guess we will see how it goes. I would really like to do the nocturnal home hemo, but haven't had a chance to do much investigating to see if it is possible for me.  There isn't a center near me that does it, but I am going to ask about it at my appointment at DaVita on Friday.   If I must do the short daily version, I have some Walkie talkies I plan on using so my poor ADHD husband doesn't have to sit for 3 hours!

[geoffcamp]

Thx all. I'm planning on having someone train with me because I'm scared they will reject me if I don't!!  I'm scared of even bringing up the fact that I will be just making a call before and after to a family member to let them know it went ok!  I don't want to give them a single reason to deny me for what could add YEARS to my life and activity level!!!  3 days a week 4 hours is just not cutting it any more!  It's been 10 plus years and its time to make the change!!

[Angiepkd]

That sounds like the best way to go, Geoff! Don't give them a reason to turn you down. What you do when you are at home is your choice!

[Speedy1wrc]

Not only is the care partner there to help cannulate, but also in case of emergency. Imagine is something went terribly wrong and you can't dial someone? Catastrophic emergency is one issue, but also routine glitches. You've only got 4 minutes once the blood pump stops to get yourself back running again. I like doing things myself by nature, but am very glad to have a wonderful care partner who wants to help.

The description in any brochure makes it sound easy, and all in all it is, but there is a lot of time required off machine too. Routine maintenance, ordering and inventorying supplies. Don't get me wrong, Home Hemo is awesome, but listen carefully to all the details.

You've probably been feeling poorly for some time so I expect that you will feel immediately better. Or at least I hope you do. Did you try the 'Experience the Difference"?

You may have a choice between bagged dialysate and the PureFlow SL. I say may, because a water sample will be taken prior to being offered the choice, to see if your water quality is up to par. Given the choice, the amount of space needed is vastly different. Right now I have a 5 day backup supply of bags and it takes up as much space as a  month's supply of pre-mix for the PureFlow SL. Depending on your prescription a month's worth of bag's could be as much as 80 boxes that weigh 22lbs each. Yikes! You will also need space for 5-6 cartridges per week, a couple of cases of saline, a big box of gauze/syringes/tape/etc, a scale, a box of consummable tubing, and I'm sure a few things I've forgotten. Holy cow!

You may be able to decrease your med's, it all depends. My nurse says many of her have. I have not, although my blood pressure is better than it has been, so same difference maybe.

My partner went to almost every training session, just because. The nurse did say that she didn't have to, but that was her choice. I'm glad she did however. My training was 4 weeks and then 1 week with the nurse at home. It seemed to be about right in terms of length of time.

You can do it. Can't wait to hear updates.

[Angiepkd]

Thanks for the info, Speedy! I will have someone here with me, but it may not always be my husband. I have several backup helpers if hubby is unavailable.  I had my home visit today, and everything looks good to use the PureFlow.  I have plenty of storage in my basement, but only a coat closet in the room I will be using.  Fewer boxes will be helpful.

I haven't heard of "experience the difference".  What exactly is it? I am really looking forward to feeling better and having more energy.  Also, I would love to have my BP meds decreased or at least have better BP readings.  I have been creeping higher and higher over the past few months.

Thanks for the encouragement. I will post on Monday after my first treatment. Hopefully it will be a good, uneventful day.  The way my luck runs, I am sure I will have something unexpected to report. 

[KatieV]

Expect to feel like you got sprayed by a firehose!  Especially the first week.  It will get better with repetition. 

[Angiepkd]

Expect to feel like you got sprayed by a firehose!  Especially the first week.  It will get better with repetition. 

I had a feeling the first week would be rough! I am hoping for the best, but preparing for the worst lol!  I have had several paperwork errors that have me a little concerned, but I am sure I will get it all straightened out. Seems like the right hand doesn't know what the left hand is doing!  Staying positive that if I can muddle through the paperwork and training, all will be fine at home.  I get my 6 year old nephew off the bus every day, and had planned to continue that during my training. Do you think I should make other arrangements that first week? Thanks for the help!

[Speedy1wrc]

The biggst hurdle to overcome is anxiety. If you've got that covered you'll be fine. I think actually you'll feel a lot better the first week. You've been hoarding toxins for awhile i am guessing so getting rid of them and any extra fludi will be a relief.

Experience the Difference is a program to give you a feel of what Home Hemo is, primarily if you are doing it in center presently. it's a week of daily hemo in center on a Home Hemo machine. Simce you are starting soon, I think it's moot for you.

Getting your nephew off the bus depnds on the timing of your training/treatment. I scheduled mine first thing in the morning to get home in time to get my step daughter off the bus. It worked and we had plenty of time. See what your nurse/center has planned for you.

I've been accustomed to hemo since 2005, and there was still a lot of new material but it comes with time. Your Home hemo nurse will make sure you know what you're doing, so don't worry.

Besides, we're here to lead you astray!

[amanda100wilson]

AngiePKD, I wouldn't recommend walkie talkies, unless you are good at switching them off at the end.  I bought a set and always forgot to do so, and they just ate batteries.   I now just,have my phone handy and phone my husband when I need anything. 

[Speedy1wrc]

Ditto on the phone. I have a screen with 2 icons. One to dial and the other a link to NxStage alarm codes.

If I get an alarm I can quickly look it up faster than finding it in the manual.

The other is a speedial and even if I can't speak, God forbid if there were a catastrophic emergency, it shows who the call is from and my partner will know it's me to be able to respond in a hurry.

[Angiepkd]

Great ideas! Thanks!

[rfranzi]

In response to inquiring about doing NxStage at home, I can only speak for my own experience, but here's what I know so far...I started doing NxStage at home on my own two months ago. I have had to troubleshoot a few alarms and issues, none of which were insurmountable. I find personally doing it at home reduces but does not completely eliminate anxiety, but I am fiercely independent and found the center tortuous, especially the last of 4 hours. Training took 4 weeks, and they made it clear that if I needed 5 or 6, it was ok. I found the training staff to be a large measure above the clinic staff, as the nurse/patient ratio was greatly narrowed. As for being allowed to do it at home alone, I had to satisfy many questions. I was required to purchase one of those wearable 911 push buttons. I have a lock on the main entry door with a deadbolt on top, and a code entry on the bottom. During dialysis, I keep the bottom locked and the top unlocked. Should I need to call for assistance, I can give them the code for entry, which I can then change as soon as they leave. While it is recommended, and I do, go "by the book" as in reading the instructions so as not to miss a step or make silly mistakes that result in cleaning up a lot of water....I made sure to practice and familiarize myself with the emergency procedures for coming off early or suddenly, giving myself saline if I feel lightheaded or that my blood pressure is dropping, and so on. (I tend to have higher blood pressure, so far that hasn't been an issue, but I have administered saline for cramping at it worked fine.) I can take my time at home setting up and putting in my needles, no 15 minute limit over my head to hook up completely as in the clinic's often rushed atmosphere. It takes longer than that with this machine, anyways. I added my own additions to the instructions for at home, such as a checklist of things to have nearby before I hook up, such as phone(s), call button, medications, water, etc....

There are levels of risk whether in the center or at home as a dialysis patient. I feel there is less of a chance of infection at home. My fistula is less bruised, harmed, inflitrated, etc. since I took over my own cannulation. I was in a center (closest to my home) with 18 chairs. I am not sure how many nurses were assigned to a shift, but it wasn't many. I was told, flat out, that as far as the techs, that I WAS their training. Scary. In addition, with 18 chairs doing however many shifts per day, during flu season or any season, I feel much more comfortable in an environment that I can keep clean and free of leaks, foreign germs, etc. Almost all the germs in here are just mine! I hope I never have to set foot in another clinic again, unless it is for travel, in which  case I will cannulate myself.

It is intimidating to say the least at first when considering to take on doing it at home, esp. if you think you are going to be alone, esp. the first time you do your own needles. But it all gets easier, and I am almost getting used to it. (Don't get me wrong, I have my bad days). I felt training was more like boot camp, but I went in there exhausted to begin with. I somehow pushed through it, and now, though (there always seems to be a trade-off) - I am not fond of a five day a week treatment versus three. I am not fond of the snap n tap or the manual labor associated with each treatment (as sometimes I am doing this to GET energy), including the administrative necessities, the outside appointments, having to drop off labs and so on. Still, being able to dialyze in private and to preserve my fistula as best I can, without some clueless techs hacking up my arm or not following best practices, well ....priceless. I encourage anyone who wants to do it alone to fight for your right to do so if you feel you are up to it. There are safeguards that can be employed. The 24/7 phone support hasn't steered me wrong yet. (Fingers crossed, behind my back.) There's a good recent article on the Dialysispatientcitizens website written by a Seattle doctor titled something like: Are you cut out for home hemo? I definitely recommend reading it if you are considering trying it. She writes from the standpoint of having been/being a caregiver to her own husband.

In my mind, if it came down to it and I had a bad crash during treatment, in all likelihood the center would do exactly what I saw them do anyways right before I left if patient crashes - they try to reduce the fluid target, give saline, and when all else fails, call 911. My clamps for a quick saline release are within inches of my right hand as I type this and are always taped in that position. By the time I called a tech to administer saline, I could have given it to myself. Just sayin.....

We'll see how it goes. Still holding breath and trying to bring BP down. I just pray I am blessed with a period of time where my fistula holds up (it was deep and curvy, not the best experience, and is still somewhat painful at times, but I am mastering it and still getting to really know it as it rolls - improving my techinque, learning to re-position and sometimes roll the needle a little to alleviate pain and so forth, so again, fingers crossed, I may for once be able to focus on my treatment and healing, rather than arguing with people about things that just shouldn't have to be discussed in those ways. I feel the way patients are being treated in a clinical setting is a crime and I am glad that this option is available to us, or I may not be here today, because not very long ago, I was thinking if the rest of my life looked like being a D patient in a clinic like the one I was in, I wasn't sure this being artificially kept alive thing was for me. But then, I learned that nearly every patient feels that way at some time, even for a minute ....from another patient thankfully, caregivers were callous - and granted, I was still relatively new to all this, quite pissed off and sick.

Nobody really wants to die, I suppose because I am still here. So here I am, writing this while doing my treatment at home, a living testament to the fact that it can be done. I meant to check in sooner with this site, because patients here have helped me through so much of my darkest moments in this last year or so, but the intensity of training, then preparing the room, then begiinning at home with the new schedule, ....well, sucked up a lot of time and energy. Glad to have found yet another informative thread here - when I first found this forum I was a pre-dialysis patient and stuck to that section, then dialysis... Long story short, a little over a year later, I'm here now. I started dialysis May 9th of 2012....it's been quite a journey. People have told me never to give up, and for a while I forgot that. I like the idea of testing this technology in a way that will help others down the road. This is one time where I am willing to accept the trade-off, that I don't mind being a guinea pig.

(P.S. For me, I chose not to do PD and just stick myself because I prefer baths (I find them relaxing and can use all of that I can get) and when I can, I like to swim, neither of which would be possible on PD - too much of a loss of important quality of life for me. That's just me....

[noahvale]

*

[rfranzi]

In response to inquiring about doing NxStage at home, I can only speak for my own experience, but here's what I know so far...

Your thoughts and insight are much appreciated.  Thank you. - Noah

You're welcome. Best of luck to you:)