Want to try home hemodialysis!

[kennebecriver]

I've only been on "in center" dialysis for about 5 weeks now, but I'm already having a hard time getting through the 4 hours, 3 times a week. I leave work at 3pm and head to the hospital which is 45 minutes away. I'm not scheduled to start until 4:45, but I get there before that so that they may put me on early. (It's either wait at work, or wait at the hospital.) When it's all over, sometimes I don't get home 'till 10pm. That's 7 hours, almost as much as my regular work day!

It looks like home hemodialysis is the thing for me. I've got a bunch of questions and will be talking to the home dialysis coordinator next time I go on dialysis.

Here's some of my questions:

Can you set your own schedule?
Can you use it while you're sleeping?
What are "button holes" and how are they created?
Why aren't button holes used for "in center" dialysis?
Do you need to have a lot of supplies and medications on hand?
Where do the supplies come from?
Are the machines portable or are they like the ones at the hospital?
Does the machine need to cleaned after every session as they do at the hospital?
How is the waste handled?
Any special requirements?

Any input would be appreciated...thanks a bunch!

[Wallyz]

The NxStage machine, is portable. The pureFlow, the machine that makes the dialysate, is not.  You do need  a lot of supplies on hand.  Half comes from NxStage, half comes from your center.

Button holes are sites that you create by using the same hole over and over, creating scar tissue that guides the needle to the correct placement in the fistula.  You can do them in center, as long as you can stick yourself.  I would encourage you to do so, and then establish  a second set after your first set is working.

You can set your own schedule, and you can do it overnight.  Some centers are not up to speed on extended therapy, but if you need to, push them to adopt it. We'll help get you the research that shows the overnight stuff is much more effective even than the daily short dialysis.  The waste is double bagged and put in your regular trash.  As long as there are no sharps in it, I have not heard of any trash collection companies complaining.

You need a partner for most centers, but there are some who are doing it solo.  I can do it solo, I have learned enough one handed techniques that I am able to, but my wife still helps as it is easier with two.

Do it. It's better for you, you will feel better, and your diet will be able to be expanded.

[kennebecriver]

Thanks "Wallyz",

Is NxStage the only machines out there? It sounds to me like they are going to be using a similar machine to the ones I'm currently using at the hospital...only a smaller version.

[Wallyz]

It is the Main home machine on the market now.  Baxter Is supposedly introducing a home hemo unit in 2Q 09. It's smaller and simpler than an in center unit.  The tricky thing with Home hemo is the logistics of getting enough supplies to the right address at the right time for a reasonable cost.

[kennebecriver]

Are all the suppplies covered by insurance?

[flip]

I recently took a hard look at home hemo recently and decided against it for now due to several reasons that have been discussed previously. I will try to answer your questions.

1) You can set your own schedule but your partner needs to be present. Machine time is about 2.5 hrs., 5-6 days a week.
2) I know several who use it at night but currently it requires an external heparin pump, as NxStage does not have one.
3) Buttonholes are develpoed stick sites like pierced ears. You need at least 3 in case one fails.
4) Buttonholes are used for in center hemo but not frequently.
5) You do have to stock a lot of supplies.
6) Supplies are shipped to you from the supplier.
7) NxStage is portable for travel
Extensive cleanup is required after each session
9) Waste handling is up to your local ordinances. Many require specific handling for biohazardous waste.
10) Home hemo has to be approved by the nephrologist at the home dialysis center you use.

[paris]

I hope some of the members who use NxStage will post and tell you their experiences.  (Petey-he needs to talk to you!)   Many members do home hemo and love how much better they feel and how much more they are in control of their daily life.  Keep asking questions; there a lots of answers here.

[kidney4traci]

I wil try to answer some.  I do home hemo on Nxstage, have for about 18 months.  My husband was not trained with me.  He is a chiropractor, so they took his medical knowledge in consideration and had him come in once to see emergency take off, etc., but I do my own treatments.  I do more treatments at home, therefore your blood gets cleaned out more often and you feel better.  Usually, you can lighten up on dietary restrictions too.  I hate being in center personally - and I love being at home.  My own tv, my pj's, I don't snore (really!) and I can snack when I want.  Here are some of your questions...

Can you set your own schedule?  Yes, definately - and not always the same time either - you are in charge!
Can you use it while you're sleeping?  You can nap, but I do not think you can do nocturnal yet on Nxstage.  I believe Adam W knows more.
What are "button holes" and how are they created? As above, and they are great.  Saves your arm/fistula.
Why aren't button holes used for "in center" dialysis?  Some do, but it helps to have the same person stick each time to maintain the "track".  You can learn to do it yourself!
Do you need to have a lot of supplies and medications on hand? I do have a corner of my room that holds boxes, and a small file container next to my machine - like you see in the nurses station for guaze, needles, etc.  
Where do the supplies come from? Two companies ship direct, they call each month to see what you have onhand.  Nxstage and Fresinius (sp?)
Are the machines portable or are they like the ones at the hospital? Portable, but heavy.  The machine has a travel case you borrow from the center to fly on an airline, but it weighs 100 lbs.  The airline is not supposed to charge you extra to fly.  
Does the machine need to cleaned after every session as they do at the hospital? Yes, just wipe down with a bleach solution.
How is the waste handled? I throw mine in the trash.  Blood is blood - they take other bloody things (yuck.. sorry)
Any special requirements? Training and approval.

[Meinuk]

1) You can set your own schedule but your partner needs to be present. Machine time is about 2.5 hrs., 5-6 days a week.
2) I know several who use it at night but currently it requires an external heparin pump, as NxStage does not have one.
3) Buttonholes are develpoed stick sites like pierced ears. You need at least 3 in case one fails.
4) Buttonholes are used for in center hemo but not frequently.
5) You do have to stock a lot of supplies.
6) Supplies are shipped to you from the supplier.
7) NxStage is portable for travel
Extensive cleanup is required after each session
9) Waste handling is up to your local ordinances. Many require specific handling for biohazardous waste.
10) Home hemo has to be approved by the nephrologist at the home dialysis center you use.

Flip, I have to correct you on a couple of things...

I have am using NxStage with no partner - and others are too.  This is a cases by case basis between the Dialyzor and their unit.  (some units do not allow solo dialysis, but can be asked to consider it)

I only have one set of buttonholes, if one should fail, I'd simply start a new one.

Clean up with nxstage is quite simple and straightforward - all supplies are one use only and disposable.

Supplies are both from the manufacturer and also your unit (or a second vendor)

Kennebec, I am assuming you are in Maine, (big thumbs up, I grew up in Waldo County!!!)  There are a lot of posts here, on NxStage, do some reading, and ask lots of questions, we are all in this together.

[flip]

I spent about 3 months trying to get approval for the solo act with no results. They also refused going less than 6 days a week. It was going to take much more time out of my schedule. I'm currently devoting 12 hrs. a week to dialysis (including travel). Home hemo was going to take quite a bit more. I'd rather not do dialysis 6 days a week. Maybe they will develope a product that can be used 3 days a week.

[cherpep]

Some centers do use machines other than the NxStage.  When I first started looking into home hemo, my center used machines similar to the in-center machines (Fresenius).  That required special power and plumbing, and it also required a great deal more training - at least 6 weeks, 8 hours for both myself and my husband.   I kept looking for other solutions.  I found my current center which supports home hemo on NxStage.  In only need 3 weeks of training, half days.  No special plumbing or electricity was needed.  It plugs into a normal plug, and the drain line goes into the sink.  For the PureFlo, we hooked it up permanently under the sink, but you can also just attach it to a faucet.  

Cleaning is very minor.  The NxStage uses a cartridge that contains the filter and and some tubing.  When done, the entire cartridge just goes in the trash.  We use black garbage bags so that the neighbors don't get freaked out.  The center provides a Sharp container which we use to dispose the needles.  My center provides the saline, gauze, needles, bandaids, gloves, heparin, syringes, drapes, alcohol swabs, tape, betadine, lab orders, etc.  I pick these items up during my monthly appointment at the clinic.  Once a month, I visit the clinic and meet with my nurse manager, doctor, and nutritionist.  I send in a list of my supplies before the appointment, and they give replenish them.  

NxStage provides the cartridges, the sack and pack for the PureFlo to make dialysate from tap water, and pre-made dialysate in bags (for traveling or when the PureFlo isn't ready).  Each month, I email a list of my supplies on hand to my NxStage representative, and each month they send a shipment to replenish.  

Using the lab orders from the clinic, we draw my blood once a month and overnight it to the lab.  We also draw water tests and send those in too.  The lab provides the shipping supplies - boxes, ice packs, pre-printed labels, etc.  

I'm attaching a couple of pictures of my supplies.  One is a shelf full of cartridges, saline, etc.  I have 8 additional boxes of dialysate that is not shown on these shelves.  I also have my white box, which has the gauze, needles, syringes, etc.  

I use sharp needles because I have a graft.  I cannot do buttonholes on a graft. I did dialysis in a clinic for about a year.  I've been doing home hemo now for 10 months.  I prefer home hemo a great deal over the clinic.  If you have more questions - ask away!

[cherpep]

I'm not sure why the pictures didn't post, so I'm trying again. 

[cherpep]

I thought I'd throw in 1 more picture.  This is my home setup.   I use a corner of my basement which we converted to a kitchen/clinic area.  I like the easy access to a sink, and the non-carpeted, easy-to-clean floor.  On the wall that you cannot see, I have a great view of our large screen projected television, movies, etc.   I also have my laptop at hand, plenty of books, and easy access to the fridge, LOL!   When we host holidays, it is easy to wheel the NxStage machine out of the way, put my chair into the sitting area of the basement, and use the kitchen to serve food.  It's a great set up for us. 

[cherpep]

Doggone it!  I forgot to post the picture.  Here it is. 

[petey]

meinuk and kidney4traci have given the answers I would give.

Meinuk is right -- clean up is a breeze.  It takes me about 5 minutes (max) to break down the machine, throw away the disposables, and wipe down the machine with a clorox wipe.  Everything goes in the trash and then is double bagged.  Then, our waste management system picks it up with the rest of our household trash.  The only thing I don't throw away are the needles and used syringes.  These go in a "sharps" container, which we carry to the clinic every month when we go for check-ups.  The clinic disposes of the sharps container.

Supplies do take up quite a bit of room.  We converted an unused bedroom into a "clinic" for Marvin.  The closet holds the boxes, and we have "stations" (cabinet, shelves, rolling carts) set up to hold the supplies that we use every treatment.  (For example, the drawers of the rolling carts are labeled and stocked with syringes, gauzes, tape, alcohol wipes, chucks, etc. so they're readily available.  Every week, I restock the drawers with supplies that are in boxes in the closet.)  We keep the needles in a drawer in the cabinet (Marvin built this).  Under the cabinet, we store cartridges, etc.  The top of this counter is our "blood work" area with the centrifuge, vials, etc.  The hardest part is setting it up so everything is right where you need it when you need it and you don't have to dig around for it.  If you try home hemo, find what works for you.  Of course, I'm kind of obsessive about organization and having a "system" -- which has been a plus for us with home hemo!

Marvin only has one set of buttonholes.  We've used the same ones since July of 2007 (when we first started home hemo).  I know how to start a new set, but we haven't had to yet.  Also, if a buttonhole didn't work today, I'd stick in another part of his fistula with a sharp (haven't had to do that yet, either).  From everything we've read, the buttonholes should extend the life of his fistula.  I think the reason they don't use buttonholes in-center is because they (buttonholes) were designed for the SAME person to stick every time at the exact same angle.  This isn't possible in-center because the patient doesn't always have the same tech/nurse sticking him/her every time.  Of course, if you self-cannulated, I don't see why they wouldn't also work in-center.  Marvin can't cannulate himself (won't even look), so I'm the one who does all the sticking.

We get our supplies from NxStage (cartridges, dialysate, etc.) and Marvin's clinic (used to get these from Baxter -- supplies like tape, gauze, alcohol wipes, saline, etc.).  The clinic said it was more cost efficient if they started taking care of these.  We get these supplies every month when we go to the clinic for check-ups.  The NxStage supplies come every month (Marvin calls in an order, and they deliver via UPS within a few days).

We have traveled with Marvin's NxStage machine, but it is heavy -- 72 pounds.  Also, you have to take all the other stuff with you, too (like bags of pre-mixed dialysate, needles, gauze, tape, alcohol, etc.).  Traveling with NxStage is a formidable task (you have to bring a lot of stuff along and you have to make sure you brought everything you need), but it is do-able.

Our area doesn't offer nocturnal home hemo yet, but we definitely want to try it!  We think this would be even better.

If you're looking at home hemo to "save" time, you'll be disappointed.  It takes Marvin about 30 minutes every day to set up his machine.  Then, he runs for 2.5 to 3 hours (depending on how much fluid he has on -- but 2.5 hours is the minimum).  Then, he holds his sites for 15 minutes while I'm also breaking down, cleaning up.  All total, it takes us between 3 hours, 15 minutes to 3 hours, 45 minutes each day for his treatments (and we do this 6 times a week).  He spends a little more (not a lot) time every week with home hemo than he did with in-center (3 times/week), but...

...if you're looking to feel better, have better labs, have more flexibility, and have more control over your life and your disease, home hemo is definitely the way to go.  Because he's getting more dialysis, Marvin feels better every day (and not just every other day as was the case in-center).  His labs are PERFECT (for the first time in almost 14 years) on home hemo.  We have treatments when we want to every day ( 8 a.m. on some days, 8 p.m. on others -- we just say tonight, "Okay, what do we have going on tomorrow?" and plan to do treatment when we want to -- not at the clinic's set time).  Marvin and I also like the control we have with home hemo.  Some people don't want to be responsible for their own care (they'd rather plop down in the chair at the clinic, stick out their arm, and let the nurse handle everything -- I'm not saying there's anything "wrong" with this, so don't take it that way).  However, Marvin and I want to do as much as we can for him.  This is his disease, and we want to control it (so it doesn't control us).

Yes, we've had leaks, we've had technical difficulties, we've been frustrated that the machine doesn't always work perfectly, we've struggled to fit lots of extra stuff into our small home.  But, all things considered -- to us -- home hemo is a thousand times better than in-center.

The one thing that I have found has helped us tremendously with home hemo is Marvin's knowledge and experience.  When he first started dialysis (in-center in March of 1995), his first nurse told him, "Watch everything that is done during treatments.  Know what's supposed to happen, and know what's supposed to be done when something goes wrong."  Marvin did exactly as this nurse said.  He knows so very much about dialysis, the process, the machine, etc.  Though I had been with him occasionally during his in-center treatments (he usually drove himself, so I didn't go with him) and I had seen how the machine and the process worked, I didn't really pay attention back then.  When we were in training for home hemo (Marvin and I and another couple at the same time), Marvin knew so much about what to do.  He answered questions for the other couple that the training nurse couldn't answer.  When the training nurse "staged" emergencies to see if we knew what to do and if we would panic, Marvin was the calm one who talked me through it.  Since we've been doing home hemo, Marvin has taught me a lot.  He taught me how to do a "wet stick,"  how to do a manual rinseback (in case the power goes out), how to draw his labs, etc. (yes, the training nurse covered these things, but only briefly and not really hands-on).  Marvin's a good teacher, and he never, never panics (wish I could say the same for me).

I think the biggest obstacle in home hemo is YOU have to want it to work for you (this is Marvin -- he wanted to do anything he had to do to get out of in-center).  Nothing's too complicated, too involved, or too tedious for him to do to make his life, his quality of life (this is a biggie), and his overall health better.

Home hemo has been wonderful -- absolutely wonderful -- for us, and I highly recommend it.  However, know what you're getting into.  Be prepared to be your own health care provider.  Research, read, and learn everything you can about it.  Don't hate it, don't dread it.  Embrace it.  Control it.  Conquer it.

Every night when I say my prayers, I thank God for (among many, many things) the opportunity to do home hemo.  It has made all the difference in our lives.

Whew!  I'm a talker, aren't I?  NxStage should hire me to promote their home hemo program!

[flip]

When you go to work for NxStage, maybe you can approve me. The biggest hurdle is finding a partner. Without one you're pissing in the wind.