Questions from a soon-to-be caregiver

[TaylorMN]

Hi Everyone:

I just joined this site - my husband will likely be starting dialysis fairly soon.  We have chosen to do home hemo so will be using NxStage - unless we chicken out and do in-center.  I'm really not much of a nurse.  I have many fears and worries and lots of questions.  I can see that all of you will be a great help and support.  Thank you already!!!  Some of my questions are:
- Could we do dialysis in the living room - in his regular recliner?  Or do we need a special chair and separate space?
- How long before the buttonhole stays open?
- Do you need to do dialysis at the same time each day and do you need to take the same day off each week?
- How restrictive is the diet?  (we already struggle greatly just trying to eat low sodium)
- Do I need to be in the same room as him the whole time?  Can I take the dog for a 15 minute walk while he dialyzes?
- My husband is retired and I work full time, so we are probably going to try and find one or more other caretakers to come in on the days I won't be home for enough hours.  Has anyone done this?  Any thoughts?

Thanks for your help!!!!!!!!!! 
Rita

[willowtreewren]

Hi, Rita,
My husband and I have been doing NxStage for a year now. We both work full time, and I do mean full time. We are at work for 10 hours every day. So here is some feedback concerning your questions:

Could we do dialysis in the living room - in his regular recliner?  Or do we need a special chair and separate space?

We do dialysis in our living room. We did not want to be tucked away. Some folks don't like to "mess with" their decor, though. For us, that wasn't an issue. Our dialysis center provided the chair, but that doesn't seem to be typical. We have used a regular recliner in other locations and have even gone camping with our machine.

How long before the buttonhole stays open?

I can't answer that one as we ladder the fistula. I'm pushing for button holes at our clinic visit this week.

- Do you need to do dialysis at the same time each day and do you need to take the same day off each week?

No. We move the time and day around to suit our schedule. We have even taken more than one day off in a week if we are traveling. You just can't do two days off in a row.

How restrictive is the diet?  (we already struggle greatly just trying to eat low sodium)

With NxStage you usually end up having less restriction. My husband eats pretty much anything in moderation. We still maintain a fairly limited salt intake, though.

Do I need to be in the same room as him the whole time?  Can I take the dog for a 15 minute walk while he dialyzes?

You don't need to be in the same room, but you DO need to be where you can get to him to handle any emergencies. He should NOT dialyze alone. We have a pool and I swim during my husband's treatments. We have a walkie talkie set up so he can call me. Yesterday there was an alarm and I was dripping water all over the carpet. LOL! 

My husband is retired and I work full time, so we are probably going to try and find one or more other caretakers to come in on the days I won't be home for enough hours.  Has anyone done this?  Any thoughts?

Any more my husband gets nearly everything set up. He doesn't cannulate himself, though. And I pull the needles, too. Your alternate caretakers will need to learn how to handle alarms and such. Perhaps others have done this.

We really love our NxStage machine. It has made dialysis fit into our lives.

Best wishes,
Aleta

[funnygarcia]

I live in MN too, north suburbs Twin Cities metro area..
My husband started using Nx Stage one year ago, he runs the show and I am there for support if needed.

His machine is set up in our bedroom, we did try using the living room but he didn't like how it took over the space ( we live in a tiny 750 ft apartment with two teenagers).
His center gave him a recliner (from Slumberland), blood pressure machine, scale, fax machine, centrifuge and assorted supplies.
We bought a baby changing table, works great to organize the daily supplies and set up the centrifuge all in one spot in our bedroom.   

Buttonholes take about 2 to 3 weeks to form.
My husband has started his own buttonhole sites several times, we keep "sharps" on hand just in case a buttonhole starts to fail.

The beauty of home hemo -- you choose the days and hours to suit your needs. Some people run 5 times per week, others at 6 times per week - depends on labs.

hmm, diet? what diet?? My DH is very bad and really does not follow the diet. He does limit high potassium foods and he gets scolded all the time for high phosphorus. Take those binders!

 
Dialyzing solo or not... depends on how flexible your center is on the subject. Your comfort levels and his independence with the process.
My dh's center is not that picky, but in the first sessions at home it's better to be there .. you will make mistakes at first, two people brainstorming "what is a red 30 and how do I fix it" is better than being alone and freaking out.
My husband has traveled without me, bringing his dialysis along. His co-workers were on hand to help if he had an emergency, but he is truly in charge of his own dialysis care.

He works full time as a teacher, I work part time plus we have two active teenagers.. life is busy, we fit dialysis to suit OUR needs. Love it, love it, love it!  He feels great, much healthier than in-center treatment.

It was overwelming at first, but after awhile-- becomes second nature.  I can hook up the pure flow to make batch..  half asleep before my morning coffee. yawwwwwn.

Good luck!

 

[M3Riddler]

Rita,

Could we do dialysis in the living room - in his regular recliner?  Or do we need a special chair and separate space?-

You can do your treatment anywhere you feel most comfortable as long as it is a clean area. No special chair required...


How long before the buttonhole stays open?-

Usually around 8-10 sharp sticks.


Do you need to do dialysis at the same time each day and do you need to take the same day off each week?-

no, that is te beauty of NxStage. You can do it at your own schedule and can arrange to have any day off you wish...You are not tied to the in-center schedule. You now have some freedome to chose...


How restrictive is the diet?  (we already struggle greatly just trying to eat low sodium)
I am not on any diet. I eat what I wish. You may however want to watch your fluies, potassium and phophorus, but usually is not an issue. Longer treatments are better for middle molecule removal such as phosphorus.


- Do I need to be in the same room as him the whole time?  Can I take the dog for a 15 minute walk while he dialyzes?-

my caregiver does go out of the room but always within hearing distance. She will sometimes go and make herself a sandwhich downstairs.

I do not permit our dog in the room at all. My room is off limits to animals. Some people d permit their animals in the room, but my opinion is that I wouldnt because they can spread dander that you cant see.


My husband is retired and I work full time, so we are probably going to try and find one or more other caretakers to come in on the days I won't be home for enough hours.  Has anyone done this?  Any thoughts?

Great idea if you ca find someone else. This will prevent burnout for the caregiver. If you are in a situation where someone else can train, then go for it.. Just make sure they ae as knowledgeable as you and iunderstand their responsibility.

[Meinuk]

You can see some home setups here:  http://ihatedialysis.com/forum/index.php?topic=375.0

As far as a chair is concerned, go for comfort.  Being able to dialyize with your feet up is also a plus. 

I was never able to use buttonhole on my arterial access.  I used the same spot, only with sharps.  Don't worry about the buttonholes, they are not a deal breaker.  As you become familiar with the system, you will develop your own routine.  Have you seen Bill Peckham's Cannulation video?  http://www.billpeckham.com/from_the_sharp_end_of_the/2007/12/cannulation-vid.html 

It helped me a lot during my training.

And, once again, I have to say that I dialyzed alone for a year.  Every treatment, except for two, my first home dialysis with my nurse & her assistant, and when I had a reporter & photographer watch me dialyize while interviewing me.  Solo dialysis is not for everyone, but for those who are up to it, it brings freedom, empowerment and better health than in-center dialysis.

You'll find many stories here on IHD, Epoman created this amazing place to help us through the whole journey from pre-dialysis questions, to support and everything in between.

[willieandwinnie]

  What a great group we are. 

[lola]

We are from MN also, Otto did most of his training alone as they knew I might not be there some days because of my schedule. When I'm home I hang around some but sometimes he's alone he always has a phone next to him just in case. He's in the living room in an old recliner but he loves it, although we are talking about him moving into a bedroom. Diet Otto is a VERY bad boy, he eats chips on the machine but has gotten very good about binders as they told him if he didn't they'd so no more to his chippies. Otto's buttonholes have never really stayed "open" but he does M-F and usually on Monday he needs to use a sharp on at least one. Usually he gets on after the kids go to school so that he has the afternoon to himself, he works full time on call at night. Good luck to you.... ps Is it just me or are there more and more people from MN joining? A MN meet and greet may need to be planned!!!!!!!!!!

[jbeany]

I'll have a go, too, and add my two cents worth -

- Could we do dialysis in the living room - in his regular recliner?  Or do we need a special chair and separate space?
If you have pets, you may want a dedicated space that you can close off.  My cat loves to chew on soft cords, so I had a bad mental picture of my blood spraying from tooth holes in the lines.  Other than that, there's no reason to hide it.  You can run water lines for a pureflow quite a ways.

- How long before the buttonhole stays open?
No buttons here - can't have them with a graft. I defer to the experts!

- Do you need to do dialysis at the same time each day and do you need to take the same day off each week?
Nope and nope.  When I was on NxStage, I've done it early in the morning and late, late at night.  You get to do what works for you.  You can switch days off anytime you want, too.

- How restrictive is the diet?  (we already struggle greatly just trying to eat low sodium)
The fluid restrictions are much easier on NxStage - you take it off nearly every day, so if you put on 2 Liters in single day, it's not much of problem to pull it back off.  Another bonus is being able to do an extra day anytime you want.  If you are planning to take Saturday off, and go out Friday night and overdo the fluids, you can just do a run on Saturday whenever you can squeeze it in, and be right back to normal dry weight.  I think the diet is easier, too - as the more frequent dialysis means you can eat more of the "good stuff" without getting overloaded.  I actually had to increase my potassium intake while on it.  When I still had a lower than normal reading, they switched my NxStage prescription.

- Do I need to be in the same room as him the whole time?  Can I take the dog for a 15 minute walk while he dialyzes?
I highly recommend investing in a small pair of walkie talkies.  I used them all the time - the partner can be outside mowing the lawn, or even next door visiting.  Can you walk the dog in a place that allows you to be back in minutes no matter where you are in the route?
 
- My husband is retired and I work full time, so we are probably going to try and find one or more other caretakers to come in on the days I won't be home for enough hours.  Has anyone done this?  Any thoughts?My ex was my regular partner, and we trained his mom to come help on the days he had to be somewhere else.  She never did get up the nerve to try sticking needles, but she had all the technical parts of the machine down pat.  It helped a lot to have an extra person for emergencies and just convenience.

[petey]

As two-year NxStage users (and 12 years of in-center hemo before that), I'll add my advice, too (though a lot of it sounds like everyone else's).

--Set up your dialysis space anywhere in the house you want.  It is easier (if you're on PureFlow) to be near a water supply for making those three-day batches and also to have a place to run the waste line without stringing it from room to room.  We have taken Marvin's NxStage on vacation with us numerous times and have dialysized in hotel rooms, beach cottages, other people's homes, etc.  (used the pre-mixed bags and strung that waste line across the room, across the hall, into a bathtub, out the back door, etc.).
--During training, the nurse cannulated Marvin with a sharp in the EXACT same spot for nine days.  Then, she switched to a blunt needle the next day, and then I took over the next day.  We've been using buttonholes ever since (and I've been the only one to cannulate him since that time).  Sometimes (maybe once or twice a month), Marvin's buttonhole on the arterial side will "close up" after his day off and I'll have to stick with a sharp.  We love buttonholes!
--Our dialysis treatments revolve around our daily schedules.  We have done a treatment at 4 in the morning (when we were leaving for vacation and wanted a good treatment in before we hit the road) and sometimes we start at midnight (when we've had busy days and busy weeks planned).  Oh, the flexibility of home hemo!  You can't do that in-center.
--Dietary and fluid restrictions are much looser on home hemo (as opposed to in-center).  Marvin eats pretty much whatever he wants (with LOTS of binders).  He can now drink about twice as much as he was allowed on in-center (and then, it was only 30 oz. a day).
--I don't stay in the same room with Marvin during treatments (I go in and get the readings every 30 minutes), but I'm in the house and within hearing distance of him.  If the alarm goes off on his machine, I hear it before he has time to call my name.  Our clinic required that the partner be in the house during the treatments (but how would they know?), and that's what we do.  I feel more comfortable being right here with him.  But, then, I'm a little paranoid when it comes to Marvin...so, if I were you, I'd do whatever you and the spouse are comfortable with.
--Marvin doesn't work, but I do (high school teacher).  Being his dialysis partner puts another 3 hours in my days, but we work around my schedule and Marvin's schedule, too (he's a busy non-working man).  We've never trained anyone to take my place mainly because I'm smothering when it comes to Marvin.  We do have a "back up" plan in case I'm in the hospital or sick or unable to assist him temporarily (what if I run off with the garbage man?  ).  A former in-center nurse has agreed to come out if we need her and cannulate Marvin and stay with him while he runs.  We haven't needed her yet, and hopefully we won't.  It just settles my mind to know she's there if we do ever need her.

NxSatge and home hemo have made all the difference in both of our lives!  We both can set up the machine (though Marvin does this on a daily basis), and we both know how to handle alarms (though I usually do this because I have two hands free).  I do the cannulation (Marvin still can't look), but he handles almost everything else.  It has given us freedom.  It has given us control.  And, Marvin feels sooooooo much better and has much better labs.  We love it!

[TaylorMN]

Oh my gosh.  THANK YOU SO MUCH for your replies.  I feel so thankful to have the support of all of you already.  I will definitely be reading and posting and asking more questions.  You are amazing people and I hope I have the strength you all do to get through this.  We are in St. Cloud - yes I'm all for a MN get together. 

Rita

[monrein]

Heck Petey, if you ran off with the garbage man you'd take Marvin with you anyway so...no problem.   

[funnygarcia]

We are in St. Cloud - yes I'm all for a MN get together. 
Rita

Do they have a center in St Cloud that uses Nx Stage now? Or will you be commuting to the Twin Cities for training?
We lived in St Cloud while my husband went to St Cloud State for Elementary Education. Great college, nice town.. but we love living in the city and gleefully moved back to the metro area when he graduated.

I think it's sad that smaller towns and rural areas do not have access to home hemo options. The places where home treatment would be the most useful.

Good Luck!
Bernice

[petey]

I think it's sad that smaller towns and rural areas do not have access to home hemo options. The places where home treatment would be the most useful.

We live in a very small town (population 750) and in an extremely rural county.  We had to push, push, push for home hemo.  Marvin is currently the ONLY person in our entire county doing home hemo.  He had to switch from his in-center clinic (10 minutes away) where he was a patient for 12 years to one an hour away to get into the program.  We had to travel every day for the almost-three weeks of training, and we have to go back to this far clinic once a month for check-ups and to stay in the HHD program.

Home hemo is an option even in rural, small places IF you push for it and refuse to take "No" for an answer.