Thinking about going back in center

[A.everett81]

Ive been on dialysis for almost 3 years, home hemo-dialysis for a little more than a year now. Like the title says Im thinking about transitioning back to in-center hemo. I love the freedom that doing my treatments at home gives me to make my own schedule and to travel but I have to admit that having 5 treatments a week is starting to take a toll on mine and my wifes mental health and our relationship. My wife works full time from 9am to 6pm and and we start my treatment  as soon as she gets home so it obviously leaves very little time for much else during the week and on the nights we dont have a treatment scheduled were so burnt out from the rest of the week that we usually end up sitting and watching tv instead of taking advantage of a night off.  We're both fairly young and, she is 30 and Im 33 and before we started my treatments at home we had a pretty active social life. Now it seems like life revolves around work and dialysis and this is causing alot of issues. I feel as if she is starting to become resentful of what our day to day life has become and its making her and I both unhappy. So Ive been going back to the center for my treatments for the last week to give her a break and I noticed that her mood has improved almost right away. As much as I love the comfort of being able to do my treatment at home, Im not willing to put the additional strain on my marriage that it seems to be causing. I know my wife loves me, without a doubt. I also know that its gotta be hard loving someone who's sick, managing a full time career, young children and being responsible for my treatments 5 nights a week. My Dr has told me that if I were to transition back in center that my health may decline as Im not receiving the same about of treatment that I was by being at home but to be honest I haven't noticed any improvement in my health or well being since Ive been doing my treatments at home, to me it just feels like the same thing just a few more hours a week. At this point I should give a few details about my treatments. I currently run 5 nights a week for 3 hours and 15 minutes per treatment. When Im in center its 3 days a week for 4 hours per treatment. My labs are perfect and I havent had any issues whatsoever with my treatments at home or in-center. My Dr jokingly says that other than my kidney failure Im perfectly healthy. Any advice from anyone who has maybe dealt with a similar situation or who has transitioned from home-hemo to in-center? Thank you guys so much for taking the time.

[noahvale]

Like the title says Im thinking about transitioning back to in-center hemo.

I'm responding to you as someone who has been on dialysis for a total of 24 years - all incenter.  Do all you can to stay on home hemo.

Are these possible options?

 * Will your center allow you to come in and do a couple of weeks worth of treatment in the Nxstage training area to get a break?  Might mean a change in your work schedule during that  time.
*  Doing 4 day per week Nxstage with upping your treatment time?
*  Doing every other day nxstage (7 treatments every two weeks as opposed to 10) with appropriate increase in treatment time?
*  Either extended hours (nocturnal) nxstage or traditional hemo at home 3-4 times a week?

It's getting harder and harder to receive good treatment incenter, especially if your only option is the standard 4 hour x 3 weekly treatment schedule.  It's OK for the short term if you are awaiting a transplant.  However, that's not enough time for the long term.  Besides that, incenter staff is highly inconsistent with infection control.  Some examples that are quite common: 

TV remotes and BP cuffs are not wiped down between patients.
Machines(including dialysate lines) and chairs aren't thoroughly wiped down between patients.
Staff don't properly reglove between patients or handling the machines.
Staff forget to either wash their hands or at least use the hand sanitizer when appropriate

Other things to consider:

If one of your wife's responsibilities is to put your needles in and you don't self cannulate, you'll be at the mercy of the staff - not all who may be accomplished stickers.  Your fistula will get a beating.

Most centers are inflexible and do not allow for those last minute needed schedule changes.

Incenters are usually loud and noisy, and definitely impersonal.

However, if you are insistent, does your clinic offer extended hours/nocturnal treatment (minimum 6.5 hours) and are you open to going on that shift 3 times a week?  (It's what I do and the Sun-Tues-Thurs schedule works great for my needs.)   Will your center "allow" you to do selfcare - or at the minimum, come in early to wipe down your station and chair/bed and string your machine?  Would this be something you're even willing to do?

Try to think outside the box to stay at home, AE81.  In the long run it will be better for your overall health.

Best wishes - NoahVale

[PrimeTimer]

My husband (the patient) and I have been doing home-hemo (using NxStage) for nearly 2 years now. It definitely can be exhausting, stressful and time consuming but, speaking as his wife, I would hate for him to go back in-center because I'd worry about him even MORE and according to his labs, I think he's healthier doing home-hemo. The proof is in the pudding; he works fulltime. I should add, we are in our 50's with no children and were not big socializers to begin with but, we do miss having weekends off (or 2 days in a row off). Seems every minute of every day has to be carefully planned out and so it is. That's why I cannot stand it when people who know what we are going through say things like "Oh, I want to get a part-time job to have something to do". Gee, wish I had THAT problem! People say something like that and I want to kick them in the teeth. 

[iolaire]

I'm only in my second year in center and am happy so far.  We have one car by choice so most days my wife picks me up. But still allows her to do something after work prior to picking me up at about 7. Some days she has plans and I pick up the car.  The nice thing for me is it allows us to go out on Tuesday and Thursday plus the weekend.  I like the ease of letting someone else use their own space and time to care for me, but I also could see the need for at home dialysis once it's harder to maintain my labs.

Some thoughts if you want to stay at home as the others highly recommend, could you run later so it doesn't impact both of your "free" time?  That way you could go to happy hours and such with friends (or whatever parents do in the evening for fun).   Even just an hour or so of dinner and wind down after work might be good prior to starting. Also the self canulation sounds like a good suggestion, that would be less work for your wife.   Otherwise can you go in center say monthly to allow her a few days rest/time with no schedule?

[Simon Dog]

NxStage was recently FDA approved for nocturnal.   I know Fresenius has approved nocturnal at the corporate level.  You may want to talk to your doc and see if that is an option.    Also, with home nocturnal, it should be possible to be prescribed a 2 on 1 off, or a 4 day a week protocol rather than 5.

If your wife currently doing anything other than cover for you in an emergency?    If she is currently placing your needles; pulling your needles; or doing any machine or Pure Flow setup - stop it.   The more you do yourself, the less stress on the caregiver.   My wife's involvement in a typical treatment consists of wishing me luck and about 3.5 hour later asking me how it went.   

As to your health - there is more than just "how you feel".  The long term cardiac stresses are lower with the increased dialysis, and reduced fluid shift, of a 5x/week schedule.    You won't get a free lunch of no adverse consequences going back in-center.

I wend back in-center for about 6 weeks after a hip transplant - the doc wanted my HGB to recover from the hit it took in surgery before he felt it was safe for me to dialize at home.    The only thing that kept me undepressed during that time was being able to look forward to returning to home treatment.

you don't self cannulate, you'll be at the mercy of the staff

The way I describe it is: "You can choose to cannulate yourself, or leave that job to a gen-u-wine high school graduate who has had a 6 week training class" .... though, in fairness, many of the techs though lacking in extensive education, are very skilled at what they do.   I said many, not all 

also could see the need for at home dialysis once it's harder to maintain my labs.

There is no universal answer to which is "better" (though evidence suggests a marginally better outcome with home treatment).   It's a very individual decision that depends largely on the personality of the patient.   I'm the type who can't stand being dependent on others and want to be a full partner in my treatment.  My wife, however, (who does not need D) is the kind of person who would almost certainly prefer letting a clinic take care of the details for her.  The trick is finding out what is the best protocol for you as an individual.

[Vt Big Rig]

You have articulated my biggest fear. I have been on Home hemo with NXStage for only 5 months and I worry that my wife will get burnt out. We are older than you so the missing "social" during the week has not been that big an issue but the constant planning and scheduling and lack of impromptu trips is a concern.

I did talk the neph into running longer for 4 days a week instead of five so we run S,M, W, T and getting Tuesday night off is like a vacation. MY wife works 32  hours a week with somewhat flexible hours so that is less of a concern than with your wife. And my wife insists on cannulating me, she visits sometimes, works around the house sometime, does some of her work sometimes, and then comes in and disconnects me, tapes me up and while I am holding she breaks down the machines. In some ways we talk more now then we did before I started dialysis since we are together more.

We've been together 45 years and I realize every day how lucky I am to have her. I have arranged with my nurse to come "run me" privately for a week so my wife can get away. Pretty expensive but worth it to me to give my wife a break.

Now as far as in center, my wife works as the dreaded dietitian at a center and insists she will do everything she can to keep me at home. She sees too much cramping, feeling bad from the amounts of fluid they must take off and way too many "shortcuts" on infection control and care. I know there are exceptions to every rule. She does not even want me to go in center when we travel which seemed an elegant solution to me.

Whatever you decide I wish you the best of luck.

[Simon Dog]

We've been together 45 years and I realize every day how lucky I am to have her. I have arranged with my nurse to come "run me" privately for a week so my wife can get away. Pretty expensive but worth it to me to give my wife a break.

I go in-center when my wife travels, but I try to arrange the day so that I avoid any two day gaps.   You can avoid a lot of the in-center mistakes if you know what to look for.  Last time, they had a heparin syringe prepared for me (I am on a no-heparin protocol), and it was unlabeled with the techs relying on "remembering what was in the syringe" (a violation of basic safety protocol).   I was able to reject the syringe, and only use flushes that I drew up myself.   In fact, I got yelled at for attempting to save the mask I used during connection to re-use at disconnect time ("you can't save that, you have to use a new one").

[obsidianom]

In the long run ( and at your young age that could be years) there is no question you will be far better off with more dialysis at home. You do have options. Oneis cutting back to 4 days on nxstage with more dialysate per treatment and/or slightly longer treatments. The other is switching to the standard larger machines at home for 4 days or every other day.   
I did 5 days per week for my wife for over 3 years. I lost her 3 weeks ago and the pain is still horrible. I WOULD DO ANYTHING TO BE ABLE TO DIALYZE HER AGAIN NOW, EVEN 7 DAYS PER WEEK.  Don't shorten your life by going in center at your age . Your wife will end up like me, wishing she could do anything to have you back.

[Simon Dog]

Don't shorten your life by going in center at your age . Your wife will end up like me, wishing she could do anything to have you back.

Excellent advice - thanks.  It's all too easy for care partners to forget this important little detail

The other is switching to the standard larger machines at home for 4 days or every other day.   

The standard protocol for the Baby K home machine is 3 days per week.   If you go with that machine, don't settle for anything less than every other day or 4 days/week.

[cassandra]

With the Nxstage you can do every other night too. I've been doing eod 5 hrs and gives the same clearance as 2 days on, one day off. I think it's more to do with the amount of dialysate liquid, and not really the amount of days. With 2 on 1 off I'd use 150 litres a week. With eod I do 210 litres a week. The amount of blood processed varies with the pumpspeed I feel like using, but is generally 260. I feel a lot better for it, and it feels like a lot less setting up, and connecting.
Just still waiting for the nurse to get me a leaking tray, blood spillage detector. But while waiting for Mr Healthy to get his a..s into gear, I'm enjoying a lot more useful daytime.

Good luck, and reconsider your options at home please.

Love, Cas

[slipkid]

Regretfully, you may indeed be feeling the way I am, after reading your posting and the recommendations offered by members of the Nxstage community: Did they read what I wrote?  Reading between the lines of your post, I suspect that the issue is not dialysis per se, but a fear of the failure of your marriage and loss of your children as a consequence of continuing to do home hemo.  Except -- possibly -- for the suggestion of in-center nocturnal, none of the proposals made by others address what I believe is your concern.

Unless you are ambidextrous, you need someone to put you on and take you off the machine.  The leading Australian expert in home hemo claims that "everyone" can learn to self-cannulate.  He is quite frankly wrong. I tried and had some spectacular failures.  I can not do it; I need help.  The proper practice of medicine is a recognition that there is NOT a one size fits all approach to care.  You have recognized that home hemo is not working.

Therefore, my advice is to abandon home hemo immediately and return to in-center dialysis.  Some excellent suggestions have been offered to minimize the in-center risks.  Watch your diet and fluid intake to minimize chemical and fluid overload.

Then, seek out counseling for both yourself and wife.  Explore if a way can be found that will accommodate your wishes and the needs of your wife and children.  What you all may be going through at this point in time might be resolvable, and if so, might allow you to return to a home hemo program.

[justagirl2325]

Just want to say your post touched me, my husband has been on dialysis for 15 months now.   Home hemo for the last few – since November I think.  And it is hard on our relationship.  At the beginning I struggled with my fear.  In centre always seemed to go like clock-work while at home we seem to have issue after issue.  Nurses could watch him pass out from low BP in the hospital with ease where when it happens at home to him with just me there I’ve ended up in the corner crying a total wreck. 

He can hook himself up with the catheter no problem. So when we were using that it went ok.  Since we’ve been trying to use the fistula it’s been harder.  He cannot do it (bad eyesight) so he wants me to do it.  I can get one all the time (but it can take me two or three needles to get it).  The other is harder, sometimes I can get it sometimes I can’t.  The set up of the machine, the needles, the dialysis, the take down and then the clean up can be 5.5-6 hours a time.

He is now working again, which is great but the jobsite is 3.5 hours away.  The last month has been a nightmare for me.  He’s either gone, or home to do dialysis.  Seems like all I’m doing is helping him arrange food for him to take, staying home at night to set up machine for whenever he happens to get home, watching his weight and BP fluctuate all over the place.  Last week he went up Tuesday, was supposed to be home Wednesday, but he stayed until Thursday – home at 11pm and the machine would not work.  So all he got for dialysis that week was a short 2.5 hour session on Monday and then nothing until Friday morning. 

When he started the job I asked him to consider doing a session a week there he said no, he’d be home enough during the week.  Well that hasn’t worked.

Friday morning I ratted him out to the home-hemo nurses.  Told her in confidence he was working out of town and not doing dialysis during the week.  I realize that this makes me sound like a total louse but I really had a break down that morning driving him to the hospital.  The nurse was a saint, kept my confidence and made it sound like it was her that was concerned and she arranged a session for him there (he actually did one there this morning as he went there on Sunday).  You cannot know how relieved I feel knowing his health is being taken care of.  It’s a mini vacation for me. 

Sorry for the rant.  Just share your concern that it is hard, I cannot imagine having to look after children at the same time.  Perhaps there can be a combination – in centre for a week, home for three, or like us, in centre in week, home on weekends?  I don’t want him to go back to the hospital full time, then he’d be miserable.  There has to be somewhere in the middle.

[Simon Dog]

The way home hemo works is if the patient is obsessive about doing it right and getting enough dialysis, not looking for a way to cut corners/skip treatment/etc.

I am using the Nx2Me so there is no way I could cheat (short of reverse engineering their data protocols) since the system transmit the details of each treatment to my RN.   She even caught me the time I got so engrossed in something that I wanted to read that I forgot to spin the blood pump up form the 200 I used to prime until 30 minutes into treatment.

[justagirl2325]

Sorry if I'm hijacking your post, but it seemed like the appropriate place to type this.  Last night my husband said he had a discussion with his dialysis nurse and he thinks he's better off at the hospital (in-centre.)  That at home it's extremely hard for him to sit there and do nothing.  That it takes everything in him not to rip the hoses out so he can get up and do something around the house (he's always been the kind of guy who updates/renovates his house constantly then moves when there's nothing left to do).  But when he's at the hospital he looks at it like a medical appt, passes the time and then it's done.  He doesn't have those feelings there. 

If he stays at home he's considering asking his doc for anxiety medicine to help him relax at home.  Which scares the crap out of me - he was on Citalopram/Celexa a few years back and the side effects were brutal and the withdrawal was as well.  I guess it would depend on what they think would work but if it's a choice of at the hospital with no extra drugs or at home but back on an SSRI my vote will be for hospital.

[Simon Dog]

If he is obsessed about not "just sitting there" at home, consider nocturnal.  He can get something accomplished (sleep) while dialyzing.   It's an amazine feeling to wakt up in the AM and see 9 minutes left on the machine.

[Zero]

I too understand how you feel. I am 32, have a 9 yr old and a 7 yr old, work full time, and do dialysis at home 2 nights on 1 off. I often wonder if it is worth it to deal with all this. I have been in center twice and it was miserable to me, between the horrible nurses and all the miserable people I couldn't hang. I do everything myself and unless I have plans I do it right before bed. There are lots of benefits too the main one is that I am able to be with my kids and they see it so they don't fear the dialysis its somewhat normal. Another one was the transplant center, other than the kidneys I'm perfectly healthy and i don't know what they liked better that or that I was a home patient. I would love to do nocturnal but I do not have a caretaker so its not allowed, seems like that might help you.