Barriers to home dialysis

[plugger]

I was talking to my state rep and he was wondering what might help people get on home dialysis. What kind of things are stopping people from this treatment besides health? The first thing I thought might be helpful is more education - maybe a roadshow with doctors and nurses?  I'm also hearing there might be a lot of doctors and staff who might need educating.

[Joe Paul]

What type of home dialysis are you asking about?

[plugger]

Ok, get technical on me! (just kidding) Actually I'm more interested in the home hemo - nxstage, fresenius machines, baxters etc...

[petey]

Our experience with home hemo and the lack of people on it in our area hinges mostly on education and awareness.  Few people know it's available and an option around here (southeastern NC).  Hey, we even have to explain it to a lot of health care providers (doctors and nurses) who don't know it's do-able.  (When my Marvin says he's on "home hemo," we've had doctors and nurses say, "So, where's your abdominal catheter?  How many exchanges have you done today?"  When we say, "No, it's home HEMO,"  they say, "You can do that at home now?  Who comes and puts the needles in for you?"     DUH !!)

Also, we think that home hemo requires a good deal of intelligence (it's not a hard process, but you've got to have some sense to make it work), strength (moving those boxes!), and commitment (it is a serious commitment and you have to be vigilant, dedicated, and conscientious to good care, clean areas, ordering supplies, taking care of your machine, being compliant with your treatments, etc.).

Some of the other in-center dialysis folks we know are simply scared.  They're scared to be at home (with no nurse or tech) doing a treatment.  They're scared something will happen.  They're scared they can't do it.  They're scared to take the responsibility of their own care (it's easier to "plop" down in that chair in the clinic, stick out your arm, and let the nurse/tech do it all).

A lot of the in-center dialysis folks around our area are older and frail.  Many of them live in nursing homes and come to the clinic on a rescue squad stretcher.  Obviously, these folks couldn't do home hemo even if they wanted to.

I think if more people knew it was an option, they might be interested.  If more people knew how much better you feel when you're getting more treatments, they would definitely want to check it out.

But, home hemo is NOT for everyone.  I'm just glad it works for my Marvin and me.

[Joe Paul]

At my center, it is a matter of money. Our Director says the investment in Nxstage is too great and that there aren't enough younger people at his centers who would be interested in doing Nxstage at home to justify the cost. Not that he wasn't informed, I had contacted Nxstage for information and gave it to the Director, then their local Rep called and talked with the Director, end of story.

[livecam]

I would think any rational person would jump at the chance to do home hemo.  Anyone who has had a taste of the in-unit kind certainly would.  Its a winning situation for everyone.  Dialysis without having to go to a unit is certainly a far better choice for many reasons that would include the mental well being of the patient, quality of treatment, cost effectiveness, superior personal time management, elimination of transportation issues etc.  How do you educate people?  Side by side comparisons might work.  Show them a picture of people and machines lined up in a unit and then a few more of people dialyzing comfortably in their own homes.  That would do it for me.

[stauffenberg]

No doubt the main bottleneck is the extremely limited number of machines available for home hemodialysis.  Another problem for some people is that they have to have the water pipes leading into their house modernized to allow for safe hemodialysis, and this can be too expensive for some people.  I had to pay $3400 to have the old pipes leading from the water mains to my house replaced before I could start home hemodialysis.

There are further subjective factors that make people not want this option.  They are forced to deal with dialysis constantly, rather than just three days a week, since they endure treatments for six nights and then have to clean the machine on the seventh day, so the well-known phenomenon of 'dialysis fatigue,' usually found in PD patients, begins to set in.  Some patients are afraid of the danger of lines coming loose or some other emergency occurring outside of a hospital setting where it could be corrected in time to prevent death.  There is also the problem of space, since one room is taken up as a sterile area for the machine, while another room is wasted for storage of supplies.  The need to be in charge of the logistics of getting the dialysis supplies ordered, checked, and stored can also be draining.  Even with all this effort at home, the patient still has to go to the hospital or clinic periodically for certain types of blood tests and for medical appointments, both of which would otherwise have been much more conveniently handled during the in-center hemodialysis sessions.  Finally there is the psychological stress of being a condemned man having to build his own scaffold, and the patient has to be prepared to have his face rubbed every day in the fact of the disease and the machine which have ruined his life, since he is much more intimately involved in the details of his medical tragedy when he has to do his own dialysis.  The difference for some people between home dialysis and in-center is like that between doing your own housework and having a professional maid do it for you: why would you want to do your own dialysis if professionals are available to take care of it for you, while all you have to do is show up at the dialysis center, sit down, and read for four hours?  There is also the added psychological stress of having the machine come into your own home, rather than being able to confine that horror at some place away from where you live.  The feeling that your life has been invaded and taken over by the disease discourages many people from this treatment, despite its better medical outcome.

[BobT1939]

For a non-intellectual discussion of how people feel about home dialysis go to the NxStage forum here on IHD. You will be spared the "horrors" of a Stauffenberg posting. The man's knowledge of our disease is amazing, and when he doesn't editorialize his posts are entirely worthwhile. Too often, however, he chooses to sink into his own personal memories of how hemodialysis was for him, when he was on it./bobt

[Psim]

I had to pay $3400 to have the old pipes leading from the water mains to my house replaced before I could start home hemodialysis.

In Canada, basic medical insurance will pay to have this done. Whew!

[petey]

Oh, stauffenberg -- I see you're your usual self today.  I hadn't seen any of your posts in the last couple of days, and I was missing you!

Another problem for some people is that they have to have the water pipes leading into their house modernized to allow for safe hemodialysis, and this can be too expensive for some people. I had to pay $3400 to have the old pipes leading from the water mains to my house replaced before I could start home hemodialysis.

With the current NxStage system, we didn't have to have ANY modifications made to our house (and our house was built in 1977).  It easily connects to any spigot (sink or washing machine), but my Marvin put (by his choice -- not a requirement) a small sink in his "clinic" (was a bedroom) and attached to the water supply line and the drain line under the sink (the attachment came with the PureFlow system).  With no costs and less than an hour's time, Marvin had connected everything that needed to be connect to get his NxStage and PureFlow system in place and working.  There was no modification needed for electricity, either -- it plugs into a regular wall outlet.   Easy, isn't it, stauffenberg?

There are further subjective factors that make people not want this option. They are forced to deal with dialysis constantly, rather than just three days a week, since they endure treatments for six nights and then have to clean the machine on the seventh day, so the well-known phenomenon of 'dialysis fatigue,' usually found in PD patients, begins to set in.  

Oh, no!  There is no "dialysis fatigue" in our house.  Marvin's treatments take about 2 1/2 hours every day (and we pick the time for the treatments and the one day he gets "off" every week).  After I pull his needles and while he's holding his site to get it to stop bleeding, I clean his machine.  The cartridge is a closed circuit and contains his filter and all of his lines.  I simply open the front of his machine, pull out the cartridge, and throw it away.  Then, I throw away the saline bag that I had hanging.  Then, I shut the door on the front of his machine and wipe down the whole thing (and it's a small machine) with a clorox wipe.  Done!  Takes me about 5 minutes.

There is also the problem of space, since one room is taken up as a sterile area for the machine, while another room is wasted for storage of supplies. The need to be in charge of the logistics of getting the dialysis supplies ordered, checked, and stored can also be draining. Even with all this effort at home, the patient still has to go to the hospital or clinic periodically for certain types of blood tests and for medical appointments, both of which would otherwise have been much more conveniently handled during the in-center hemodialysis sessions.

We emptied ONE small bedroom and made it a "clinic" for Marvin's home hemo treatments.  Marvin built shelves and cabinets to hold supplies and the closet in that room holds all the big boxes.  If you plan it right, it's not that bad.  We did give up a bedroom (and only one, not two), but we weren't using it anyway.

On home hemo, Marvin and I draw his labs every two weeks.  We get a box from the lab a few days before "lab day."  I draw the required tubes before and after treatment (using his arterial line -- so no extra stick).  We have a centrifuge (supplied by DaVita) to spin the necessary tubes.  I refrigerate the labs (Marvin put a small fridge in his "clinic" -- again not mandatory but his choice) and Marvin calls FedEx.  FedEx picks up the box the next morning.  Can't get much easier than that, can it?

Finally there is the psychological stress of being a condemned man having to build his own scaffold, and the patient has to be prepared to have his face rubbed every day in the fact of the disease and the machine which have ruined his life, since he is much more intimately involved in the details of his medical tragedy when he has to do his own dialysis.

There is also the added psychological stress of having the machine come into your own home, rather than being able to confine that horror at some place away from where you live. The feeling that your life has been invaded and taken over by the disease discourages many people from this treatment, despite its better medical outcome.

Fact -- your life has been taken over by this disease whether the machine is in your home or not.  Just because you only see your machine three times a week at clinic doesn't mean you're not a dialysis patient the other four days a week.   Your way of thinking seems to be, "If I don't acknowledge it, it doesn't exist."  Well, stauffenberg, it does exist whether you acknowledge it or not.  Marvin is a dialysis patient 24 hours a day, seven days a week.  We choose to embrace it and control it -- instead of letting it control us.

To Marvin and me, dialysis is not a "horror" -- think of the alternative.  To us, dialysis saves and extends Marvin's life each day.  Something (like dialysis) that does that for Marvin can't be bad.

Marvin has a lot more confidence in having his treatments at home with the same person sticking him every day than having multiple people do it at the clinic.  Marvin likes to make sure that his machine is cleaned, set up, and maintained properly -- we know we're doing that, but we don't know what's being done at the clinic.

To us, it's all a matter of attitude.  Dialysis is what you make of it.  If you make it a "horror," it will become one.  If you make it a part of your everyday life and treat it as a necessary process, that's what it will become.  We choose the latter.

Is home hemo inconvenient?  Yes.  Does it take about four hours out of every day for us?  Yes.  Do we have a lot responsibility to conduct Marvin's treatments?  Yes.  (It takes about 5 minutes every month to order Marvin's supplies.)  But, the advantages far outweigh the disadvantages.  Since we started home hemo, Marvin's labs have been near PERFECT.  His energy level has increased by 300 percent.  He's come off all BP meds and a lot of other meds (he's down to four pills a day !!! -- and he had gotten up to about 16).

Stauffenberg -- where did you get your information?  Some of your statements about home hemo are simply inaccurate.  You obviously have not tried home hemo, for if you had, you would know that it's not as bad as you make it sound.

We don't think that home hemo makes Marvin a "condemned man building his own scaffold."  We think it makes Marvin a man who actively participates in the continuation of his life and who every day improves the quality of his own life.

[BobT1939]

Ah, the sweet sound of reason. Bless your heart, Petey./bobt

[willieandwinnie]

Well said petey. We didn't have NxStage, we had the old Fresenius 2008H and an RO. We had to have an electrician and a plumber do some modifications (paid by Medicare) to a spare bedroom, they did both in a couple of hours. We put the RO in the closet because it was kind of noisy.  We already had dresser and some cabinets, so storing stuff was not a problem. I drew Len's labs once a month and drove them to clinic. I gave him his EPO and he had the best labs out of the 4 clinics our Neph took care of. Once his treatment was finished, I wipe the machine down and then it did the acid rinse and the heat disinfect by itself. Yeah, the supply order took a couple of minutes to order and a little longer to put away. We figured if Len had of stayed in the clinic, he would of been dead by now. His condition would not of improved enough to get him on the transplant list and finally a transplant. Yes Len did have the "dialysis fatigue" but it was such a blessing that we didn't have to drive 20 miles for him to lay down. The only out of pocket expense we had was a flat screen tv/dvr/cd player that he didn't have to share with anyone and he had the best tech he could possibly ask for. I was careful about sticking his graph and NEVER reused a single needle, I even used separate ones for numbing aterial and venous. I say if someone can do home-hemo, DO IT, you might just be saving your own life. I'll now jump off my soap box.

[del]

Well said Petey and Willieandwinnie. Hubby has been on home hemo for about a year and a half now and no dialysis fatigue here.  A lot less than when he was in center where he had to drive for over an hr to get to the center 3 times a week.  Because he does nocturnal he doesn't have to give up any time in his day.  As for cleaning the machine I put it in acid clean as soon as he is disconnected.  By the time the needles are out it is time to put it in heat disinfect.  By the time I get a shower and get ready for work everything is cleaned. Hubby strips the machine and dumps the left over baths when he gets up. As for changes to the house we had to put a water hookup to the bedroom and a drain and get an electrical outlet put in. Hubby did that himself so only cost us the price of the materials. We have sensors for the floor and his arm in case there is a leak.  There is a tech on call 24/7 that we can call if we have any problems. Had to call 12:00 on Friday night .  He helped us fix the problem.  Home hemo is the way to go I think!!!  Hubby does not even want to think about having to go back to in center.  As for bloodwork he has to take that to the hospital once a month but we live in a rural area so it is a chance for us to go shopping!!He only sees the kidney specialist once every 2 or 3 months so it is no big deal.  I think there is a lot les chance of something happening at home than in center because at home you are in control and you look after things.

[Meinuk]

Things are rapidly changing in the dialysis world. 

NxStage shrunk the home hemo machine and with disposable single use cartridges (tubing and artificial kidney) cleaning is really more like a wipe down after a run or the occasional drain flush or sensor wipe.    The exciting news, there are other technologies in development that are just a few years away (less dialysate, more portability).  For me, dialysis is a daily therapy that maintains my well being, allows me to work, vacation and schedule my time as I see fit.  As opposed to the rigid schedule of 3x a week in-center dialysis.  And I can now brag that I have mad skillz with a box cutter.  (comes in handy in my 'hood)

The downsides for me are:

It is not a cure, it is a therapy - no skipping and until I get a transplant, (also not a cure but more portable) this is my life. 
The supplies take up a lot of space, (and I'm using pureflow) of course space in relative, I live in a three room NYC apartment.
It does take dexterity and diligence, and adequate training.  For me, that is amplified, as I dialyze alone.  With a partner, you'd have a built in safeguard.
It cost me $175.00 to have a plumber adapt my kitchen sink for the pureflow connector.  (I have old plumbing, and was unable to do it myself)

Those are my downsides, which are completely negated by the positive impact that daily dialysis has had on my life.

[Joe Paul]

Ughhh

[jbeany]

I think the self-cannulation stops a lot of people.  They can't picture putting in the needles themselves.  Having a reliable partner is also an issue - it takes a large time commitment from your training partner.  I know some places offer home hemo training to people without partners, but it's a difficult fight.  Getting the doctors and nurses to accept that home hemo is a better option is tough as well - some of them just do not believe that it's a good option for anyone.  They don't adapt well to change!

[BigSky]

Actually what stauffenberg said was dead on and often cited as problems people have with home hemo by the industry.  While they may not affect everyone, its still things that people have to deal with at one time or another.

[plugger]

Ok, this is great!  It is going to take some time to process all this and if anybody has more, join in!  I think I've mentioned a small group of us got that tech training bill through Colorado - we are still in an exploratory phase here, but this could very well be real.

[kitkatz]

My issues are in getting the center that does the training to agree to MY timetable.  Their schedule and my schedule will not mesh and they are unwilling to make an exception.  I will not take six weeks off of work to train for dialysis.  This is a ridiculous expectation on their part!

[petey]

kit -- Marvin and I trained in the summer (when I was out of school).  Would this be an option for you?

[kitkatz]

These people say I do not have the right time table for them

[KT0930]

I have not had the chance to talk to other dialysis patients (aside from the ones on IHD, of course), but if it weren't for IHD, I would be completely uninformed about home hemo - wouldn't know it was a possibility! Also, both times in my life that I have been on in-center hemo, I had a permcath, and the machine was set so far back from my chair that if I had attempted to turn and see what was going on, I would have caused the cath to kink and an alarm on the machine. So for me, hemo was a very scary proposition of not knowing what was going on, not understanding enough to even begin asking questions, and being "thrown into it" based on a very rapid, unexpected decline of kidney function. At least if I could have seen the machine and what was going on, I would have had somewhere to begin. It's almost like the nurses and techs wanted to keep it all a big secret, so their jobs were secure. 

Basically what I'm saying is, more education before, during and after initiation of dialysis treatment so the patients know what's going on and what ALL their options are would probably get many more patients interested in this type of treatment. Especially the ones who are not the stereotypical "old and frail" patients that you see in-center.

[Roadrunner]

When we moved we wound up is an awful dialysis center.  I called around and begged and cried. All the good centers were full.  One social worker who I talked to 3 or 4 times finally told me that there was an alternative.  HOME HEMO.  She asked if I would like to find out more.  I jumped at it.  We were the second pair they were training.  We had a wonderful nurse and we wouldn't go back to in-center for anything.  My husband feels better, looks better and is getting stronger.  My biggest fear is that I get sick or too old to do this.  We are both in our 70's and it is a concern. 

How old our other partners?

[petey]

roadrunner -- even though Marvin and I are relatively young (he's 52 and I'm 45), I worry about what would happen if something happens to me.  Yes, I'm quite healthy, but I could break an arm, need some type of emergency surgery, or something like this in the next minute, hour, or day.  I'm the only one who trained with him, and he WILL NOT cannulate himself -- he won't even look when I put the needles in.  This worry hangs over my head daily; he needs me now more than he ever has before.

[stauffenberg]

Petey, I believe that what you regard as 'errors' in my account of my personal experience while I was on home hemodialysis has to do with the fact that you are comparing your experience with NxStage with my experience with a conventional Fresenius dialysis machine placed in the home.  NxStage was not available in Canada when I was on home hemodialysis in 1996. 

Needless to say, I stayed with that form of treatment only a short while, mainly because it interfered with my psychological coping mechanism for surviving on dialysis.  For me, in-center hemodialysis was just a ritual which required me to sit in a given chair for four and a half hours while nurses ran around me doing one thing or another, and while I read books.  I used to think to myself: so what's the problem with having to sit in this chair reading rather than having to sit in a different chair at home and read?  But that whole intellectual strategy was defeated when I had to involve myself actively in the whole treatment process which, as I have said before, was for me like being a condemned man being forced to build the scaffold that would hang him.  You don't want to have to spend years of your life staring at the photograph of the person who will some day kill you, or taking apart and putting together the car that will one day run you over and end your life.  In the same way, you don't want to spend every day of your life fiddling with the machine that symbolizes the fact that disease has destroyed your chance of a normal life.