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

[boswife]

We're in the process of getting buttonholes in prep to possibly going on home hemo.  Theres a couple of previously NXstage users back on 'incenter' dialysis where we do treatment.  Each has said that it just took up their lives and that of their whole family to do it at home.  That it was VERY intrusive on their lives , and not the *fredom* they had hoped for.  Im a bit discouraged, but still do understand that everyone is different.  We have only a 5 min travel back and forth to D as it is so that is not huge prob for us so what im looking for is the 'easier on the heart etc' benifits so am not real worried about being "put out" by the whole thing.  Any advice you would like to offer will be much appreciated. 

[greg10]

It seems to this newbie that if your husband is doing well in-center and he likes his treatment in-center, why would you change?

However, more often than not, there is a significant portion of patients that don't do well with the 3x weekly dialysis and many times they also have objections to the way that they are treated in-center.  In those cases NxStage is certainly a viable alternative, if available.  Most NxStage training centers would also like you to commit to a 6 month trial of NxStage before you change your mind, and this is in addition to the 3 to 5 weeks of training that you would have to go through.

So perhaps the real question is whether it is worth 6 or 7 months of your life to find out the possible benefits.

[vcarmody]

I'm not gonna lie, it does take up a lot of time.  But would I do it any other way? NO.  I love every second I spend with my husband.  And I do love the freedom that Nxstage gives us.  We choose what time to do it, so we don't have to miss anything in our lives.  We choose our days off and we can just up and go to the shore, AC or even camping whenever we feel like it we just put the cycler in the car and the supplies and off we go.  I also love the fact that I control his treatment, his center loved to over dialyze him sending him home with cramps, headaches and vomiting, plus he seemed to always be missing important things our kids were involved in because he had treatment, that is not a problem anymore.  I was the one that decided to do Nxstage after reading how much better and gentler it was.  My husband though it was to much work for me, but I convinced him it was my choice and if I didn't want to do it or if I felt it was to much I would let him go back in center.  The first week home I was so scared I wouldn't be able to do it, I was getting overwhelmed with all the steps and all the alarms and my husband kept saying I should just go back in center, but I was stubborn.  I wanted to have the best treatment and I knew that would be at home.  Now it is almost a year later (we started training in October) and I don't regret my decision at all.  Good luck in what ever you chose to do.  Keep us posted!       

[okarol]

Because NxStage is more often many patients have said they feel better than on 3X a week.
You might want to read about Epoman's experience training on NxStage http://ihatedialysis.com/forum/index.php?topic=813.0 and check out Meinuk's too http://ihatedialysis.com/forum/index.php?topic=5229.0

[boswife]

All great points (and last night i did go through all of Epomans experience but not Meinuk's yet so thank you on that    )
in center is really quite fine with us on one hand, and quite the social experience as hubby is very friendly, and i have become the ~go to mc donalds for coffie+burito lady~ (which is really something for a social phobic me) so  all in all, our experience has been good.  But............ Im looking into this for the same reasons as vcarmody.  I want this to be as soft and easy on hubby as i can possibly contribute.   And I too am the instigater in all this just as vcarmody    It's really good to hear that it is worth it and can work so well.  The two at our center that were at home both had more than just them and thir mate, so that may have been a bigger issue as well.  So, we shall see, love to *hear it all* from anyone who whats to offer anything here  .  its all appreciated.  Thanks

[silverhead]

I really like VCARMODY's reply, if sums up our experience quite well, and in our case it really strengthened our bond. Like so many other couples we had a good marriage but had settled into a almost ho-hum routine I guess, then ESRD struck and she spent 2 years in-center, which was a good one, but rigid scheduling, those incredibly uncomfortable chairs and so forth made us really push for NxStage and because of that we were the first in the area to learn it, once settled into the daily treatments and gaining experience on it there was no way we would ever go back to the old way. the upshot was that we were able to spend 5 or so hours a day closely working together and enjoying each others company. I wouldn't trade those last 3 years for anything.......
Tom

[jbeany]

I really preferred NxStage over in-center.  I could drink more because of having the fluid pulled off more often.  I could eat more of what I wanted without the worry about potassium build up. (They had to switch my prescription because my potassium became too low.)  I felt better from the first week - more energy, less foggy-headed.  I could do it when I wanted, on my schedule.  I could switch days or times whenever I had a family occasion to go to.  I didn't have to freeze in the center's ac, and I didn't have to listen to my in-center fellow patients vomiting, or smell when the senile little old lady next me used the commode during her treatment.  My friends could come over and visit while I was on the machine, or I could do crafts with a big table pulled up to my chair.  I could watch my favorite tv shows instead of crappy daytime tv, since I could schedule my sessions for when they were on at night. Or have 6 or 7 books to pick from without having to carry them all with me to the center.  I could yack for hours on my phone, compared to being in a center than didn't allow them at all.   

I did 5 days a week, since that gave me excellent numbers without needing to run for 6.  I just never had more than one day off in a row.  Soooo much nicer than the huge, fluid retaining gap over the weekend in-center.  I hardly ever cramped with NxStage, since I could set my own numbers and change fluid goals up and down repeated during a single session if I needed to.

My nearest center was an hour's drive away, so I actually cut down on time spent for D, even if I increased the time on the machine.  Plus, I live in Michigan, so not risking driving during the winter was wonderful.  I also saved a lot of time that had been spent sleeping to recover from in-center, too.  The 3 days I went to in-center D were pretty much a write-off most of the time.  I tended to come home and nap whenever I'd had a tough run with cramping and crashing.  I didn't need to nap after NxStage runs, and since I usually did them last thing at night anyhow, if I did feel crummy, I was headed to bed right after anyhow.

I do realize that it's not the best solution for everyone.  For me, though, D stopped being this dreaded, unavoidable appointment and became this vaguely boring chore that had to be done, like doing the laundry. There's a lot to be on top of and in control of - inventory, scheduling, cleaning, set-up, reporting results to the nurse, etc.  If you are more hands off in your approach to your health care, then it's all going to seem like an excessive amount of work compared to showing up to the center.  If you are a take-charge, do it my way sort of patient or caregiver, though, it's really much better than in-center.

 

[Meinuk]

I still have a phobia about boxes.  (NxStage in a tiny one bedroom apartment is a commitment.) BUT with  two years of hindsight, I can say that was the only real drawback to NxStage that I had. All the political stuff was just unique ugliness that could happen anywhere - sadly, it happened to me.  I don't blame NxStage for that, on the contrary, it was NxStage that was quietly "on my side" - I blame DaVita. But I digress.

You still need to schedule your life around your dialysis treatment, but it is YOUR schedule and YOUR life.  NxStage is empowering, tiring,your home becomes your clinic, you have more physical energy (all the better to move boxes with) but above all, you are HEALTHIER!

It does take a certain mindset to overcome self cannulation, self centered therapy and management of supplies, records and all of the details that come with at home dialysis.  But for me, it was all well worth it.

I look at dialysis as being a part time job.  Either you can work from home, or go into the office.  But, you get "Paid" better when you work at home.

I did my dialysis alone, so I cannot comment as to the family dynamic of taking dialysis home with you, but my hopes would be that your family want the best of health for everyone.  Still, I look at Zach's example of thriving in center at a great unit, and I know that it can be done.

It was because of Epoman that I blogged my training (and written about pretty much everything else dialysis related that I have done) my advice is educate yourself, really look at your lifestyle and then make your decision.  But even if you try it, you can always go back in center - nothing ventured, nothing gained.  I was feeling the difference after my first week of training.

[boswife]

Im loving, and appreciating, all your inputs.  I thought the main thing i needed to over come was my fear of needles.  That is happening, though some days are worse than others.  (we're starting buttonholes on hubby and i am watching very closly at the process, and not passing out, sweating, getting dizzy or anything) I know i am one that can accomplish this as im very stubborn that way, now we just have to figure how we feel about the rest.  Im hoping they will let me do his needles in center for a while and see how we feel about that and if that initself is enough to make us more comfortable.. We shall see, but once again i thank you from my heart for helping me through my/our decision making process..

[monrein]

I've never done nxstage since it wasn't and isn't available here in Canada but I did several years of home dialysis (5 hour runs x3 weekly at that time).  I liked the control and the freedom of being in my own home but I found it quite stressful on my marriage since my husband was essentially confined to the house for all that time too.  I was 26 and he was 32.  I did my own needles although he set up the machine and broke it down since my job made that the most efficient way to go. 
Having said this, if I had to choose at this point, (I'm now 57) I'd do Nxstage with him as backup but I'd do everything myself, including buttonholes and I'd try to free him from the burden of extreme caregiving.  I know that there are many who don't view it as a burden but short term is one thing, week after week is another and I certainly viewed myself as burdensome...a most uncomfortable thing for me personally. 
The last time around, prior to my current trx, I found the best solution for me was the self care clinic where I did everything except break down the machine at the end but there were nurses present in case I needed something...like having my pen retrieved from the floor for example.

Good luck in finding what works for you both and in making it support rather than erode your relationship with each other.  Oh yeah, and keep on talking about how each of you are feeling about things as you go along.   

[lillinny]

Hi!  We are newbees and been at home since end of July after a month of home hemo training.  At first I thought that it was overwhelming (the training, boxes, etc.).  And, honestly, it is challenging and scarey at first.  I had a hard time with one of the buttonholes (venous) and the nurses did as well. . . But that seems to be better.  The needles were by far the worst thing for me!!!  It would work fine for a week and then it would be a disaster and couldn't find the vein to save my life!      However, (Knock on wood), the last two weeks have gone swimmingly and I think the buttonholes are finally established and it has become a slam dunk!

Since I work, it was transparent to me when my husband went to the center.  It really didn't affect me.  Now that we are home, it has become a major part of my life as well.  Yes, it is a 'half time' job.  However, we have such great flexibility.  For example, we usiually run from 5:30 p.m. (when I get home) to 9:30ish.  He is able to eat, drink and watch TV in the comfort of home.  When either of us start to complain that "we are stuck sitting here", we remind each other that all we have ever done in the evening is sit, eat and watch TV in the evenings......... SO THERE IS NO DIFFERENCE!!  Also, if we want to skip a Saturday and run Sunday morning instead, we are able to do that.  If we are going out to dinner (on the weekend), we run in the morning. 

As VCARMODY and SILVERHEAD said, it does create a greater bond.  We have been married for 37 years and certainly fallen into a routine.  Now that routine has changed but in many ways for the better.  We do spend time together while he is on the machine which has turned out to be a good thing.  You could say that we have taken up a new hobby!   

[Jelena]

My husband is on NxStage for three years now and we are grateful for it. He was in center for the first couple of months after he was diagnosed and our experience was not good. He crashed a few times, one time ended back up in the hospital for dehydration (terrible experience), felt worn out every time after the treatment, and we both felt that the attention he was getting from his nephrologist on his once a month tour of the center was just not satisfactory. However, I have to say that the center and its staff were very nice and caring, but it just wasn't for him. So, we started the training for NxStage and from the very beginning, my husband felt a whole lot better! No more crashing, we were able to control how much fluid to be taken off, etc.

It was stressful when we first got home, I was afraid of bad sticks and red alarms, but we learned it, and I am no longer panicking. I know that either a tech from NxStage or our nurse on-call are just a phone call away.

We start when I come home from work. He has already prepared his part, I come home, change, prepare my part, hook him up, give him his computer, he watches his shows, I read my books, knit, watch TV, we are together. And as others have mentioned on previous posts, it brought us even closer. We are in it together. Is it tiring? Yes it is. We have to stay up late, and I like to go to bed early. But that really doesn't matter because nobody would ever tell that my husband has such a serious illness. His KT/V is great, his doctor is happy, in our center they say he is their "model patient". His labs are fantastic. What else can we ask for? There is no doubt in our minds that we did the right thing. We have two days of, Wednesday and Saturday. I catch up on sleep on these days. And everything is fine.

However, we do not have children. Many times I thought how we would have done it all if we had any. That, I really don't know.

Good luck, and I hope you decide what's best for you. But have in mind, that you can always go back to in-centre if NxStage doesn't work for you guys. You don't know until you try. Best wishes, and we will be here for any questions. I learned so much from this site.

[boswife]

gosh you guys are GREAT!!!  we are so much more leaning to at least giving it a go and really getting excited about it!!  Still not positive, and some of the family (adult children) are worried that our house will be like a clinic and not as welcoming but I dont *think* one little ole machine will turn us into a clinic???  (i do get a kick out of "still having phobias about boxes though..lol)  And,Im just a tad worried about my grandbaby (2yrold) but he's grown up around us and is wonderfuly respectiful of our NO NO areas    I know this is going to sound selfish, but i also got a pinch (just a pinch though) of worry that i'll miss "my" time where after i get him all set up at the center, i take my two dogs to the dog park, ride my bike and visit our daughter..  But!!!!!  now, i can do that on the mornings where he wants to laz around or, he join me at the doggie park and do his morning exercise there..yea!!  good idea jill  ...  I think this was the only drawback for me i've found though so that's pretty good. 

[cookie2008]

At my house you cant tell I am on Nxstage, I have everything put into my bedroom closet, when it is time we just wheel it out.  My children are grown, but my daugther has three children and they live with us and there ages are 7, 5, and 3 we tell them that its my kidney, it seems not to bother them.  I would never talk anyone out of doing nxstage.  It is a totally different life less restrictions, more energy, you have more control over your health, and most important you do it together.  Cookie

[boswife]

YEAH!!  thank you cookie :-)  hubby JUST asked me to find out if it was "roll away able" so i came on to ask that very question and saw your answer right here..lol  Thanks a bunch...  I cant believe im getting excited about this. 

[lillinny]

Hi, Bos - Our son and daughter and their two children (ages 2 and 4) live with us.  They have both been told that the machine is dangerous and not to be touched and that is fine.  They come in and kiss my husband goodnite and talk about the machine 'cleaning poppie's blood' and joke about nana using the needles on them.  All very normal to them.  The 4 year old was telling people at the park that nana was sticking needles in poppie and spilled blood on the floor!!!!!!!!!!!  Still waiting for Child Protective Services to appear at our door! 

The other thing that everyone has touched on is that you can go away and bring the cycler with you.  Gives you alot of freedom.  We just went to the river for 4 days.  It does mean carting a 75 pound machine and numerous boxes but was definitely 'do-able'.

Good luck no matter what decision you make!

[silverhead]

Spilling blood is inevitable no matter how careful you are, although I was very prompt at cleaning any spillage, bedding and linens were promptly rinsed, treated and washed before they could set, for the carpet I kept a "Little Green Machine" primed and loaded and was always able to get the blood up with a little help from OxyClean, but Sharon always was joking about the fact that if a Forensic Squad ever went over the house they would think some kind of slaughter had occurred there.....
Tom

[lillinny]

Yes!!!!!!!!!!!  There was one night that our bedroom looked like a crime scene!  (Forgot to clamp the line prior to disconnecting!)  We have hardwood floors and have the Clorox wipes on hand at all times! 

[boswife]

yeah for hardwood floors!!  We have them too throughout the house so we got a good start on that mess..lol  Guess im going to be getting a nice dose of what i fear the most....needles AND blood..ick,,but im getting there.  I even stood by and watched another friend in dialysis do his set up, and needles and he talked me through the whole thing..  By the time i go for training, im going to at least have a clue as to what im in for.........With much thanks to all of you!!!!!! 
PS..my friend at D told me his reasons he's back 'in center'.  Was just family matters and will go back when situation changes.  Encouranging!!  He also reminded me how we dont HAVE to stick with it or feel guilty if its not for us.  I like that too and all of you have given us the same advice..  Very amazing, and empouring im beginning to feel and i havent even stuck him yet..lol

[lillinny]

Amen, sister!  Give it a shot and see where it lands.  I can honestly say that it does get easier!  thank heavens!  And, on some level, sticking needles into ones husband sometimes feels good!   

[silverhead]

Sharon quite often told people that i was one of only a few men in the world that was legally allowed to stab his Wife twice a day for 5 years, and yes some days there was a certain perverse satisfaction in doing so.....

[cookie2008]

My husband made my stand and put wheels on but you can get some at lowes.

[Meinuk]

Epoman started a thread for people to post their home set ups.

http://ihatedialysis.com/forum/index.php?topic=375.0

I posted pictures of my beloved (NOT) boxes in my training diary at the bottom of the first post. 

http://ihatedialysis.com/forum/index.php?topic=5229.0

As for leaving a blood trail.... there was the day I didn't tape my venous properly, and it was like a paint gun attacked my livingroom.  That was when I wrote about having a "Carrie Moment".  You do get desensitized to the blood - really.....

[kellyt]

I have no personal experience with NxStage or home dialysis, but I can tell you that when I asked my Nephrologist what he would do if he were in my position he said he would do home hemo hands down.  Good Luck.   

[vcarmody]

We purchased a Safco printer table, it is on wheels so we can wheel it around.  Originally we had a whole bedroom just for his treatments, but my oldest daughter moved back home and we moved everything into our bedroom.  We have a very small 3 bedroom house so we put all our supplies in the dining room against one wall.  When people visit they only see the boxes and they are stacked neatly.  The thing I hate the most is the boxes after they are used.  We recycle them, so they all have to broken down and tied up and tying them up is a major pain in the butt!!! 
The only thing I want to stress is that it does get easier.  Don't give up if you hit a few hurdles in the beginning, to many people give up right out of the gate without giving it a chance.  I know I almost did, and I am so glad I stuck to my guns and kept at it.   We are pretty new at this also we only came home in February and today we booked our third cruise (we already went successfully on two).  Love the freedom!