I am very interested------

[obsidianom]

I am very interested in responses from in-center hemodialysis people here as to what reasons you are in center as opposed to home hemo. Please understand this is NOT perjorative in any way. I am not judging you for the decision . I am sincerely interested in the reasons. I would like to see if there are obstacles to home hemo that are preventing more people from doing it. If it is simply convenience please say so . If there are problems preventing you from home hemo please state them .
Thank you in advance for your answers.  I have really appreciated all of you since I joined this site and have learned a lot that has helped me care for my wife better.
I am doing this as a doctor . I would like to see barriers to home hemo come down. I would like to see more patients benefit from what my wife has experienced via home hemo.  This is not a formal study, just informational. Its something we can talk about here and perhaps in some way get out the word to others to help.

[Rerun]

I did home hemo in 1987.  My house turned into a hospital.  My machine was in the kitchen and that dumb blue recliner in my family room.  I hated looking at all that day in and day out.  Bags of supplies those huge blue barrels in my basement.  Supplies overflowing my closets.

Never again unless I had a whole half of a house I could block off for it and never see it.

As much as I hate the center.  I do get to walk away and leave the mess there.

[komomai]

I am doing in hospital dialysis here in Okinawa, Japan.  I have asked my doctor about doing home dialysis his response was to do in center treatment for a few months.  Reason is no one on Okinawa is doing home hemodialysis, and I'm opening new grounds here.  There is also the required training, which would be only in Japanese, fortunately my Japanese wife will be my hemodialysis buddy.  Oh yeah I'm using a tunnel catheter as my doctor said I'm not a good candidate for a fistula, plus I don't like needles and pain.  If I'm allowed to do home dialysis, would like to use the Nexus machine, but most likely would be a Japanese machine.  While my in center dialysis is good, they only do it for 3 times a week, It makes more sense to me to do it in the comfort of my home, when I want to and get more dialysis time.  I just hope my tunnel catheter lasts, I was doing PD for 3 1/2 years till I got a nasty infection and out it came.  My wife has kindly donated a kidney to me and our plan is to do a transplant within a year.

[Riki]

I do in centre hemo mostly because there is no other modality offered here except for PD, and I'm unable to do that anymore.  Even if home hemo was an option, I'm probably stick to in centre, simply because I'm legally blind and would never be able to put my needles in, and my mother refuses to do it. Don't blame her, really

[Jean]

I am not on D yet, but am now at the point that I need to make a decision. I plan on doing nocturnal in center hemo. Only because I have no room in my house to accommodate all of our junk, let alone the dialysis junk.  I did start to move the junk but now, I am too tired and in too much pain from a bad back to want to do it.

[MaryD]

I am doing PD at the moment.  I know this wont go on for ever.  In Australia home haemo is pushed ahead of in centre haemo.  I don't think I would be able to do HHD.  I am 70, have no feeling in my hands (or feet), and I live alone.  I think it's too much of a risk. 

The thought of in centre haemo appals me enough to think I might call the whole thing off if/when PD comes to a grinding halt.

P.S.  In Victoria I could get a renal nurse to hook me up every time (no charge), but I still feel it is too risky.

[obsidianom]

I am doing PD at the moment.  I know this wont go on for ever.  In Australia home haemo is pushed ahead of in centre haemo.  I don't think I would be able to do HHD.  I am 70, have no feeling in my hands (or feet), and I live alone.  I think it's too much of a risk. 

The thought of in centre haemo appals me enough to think I might call the whole thing off if/when PD comes to a grinding halt.

P.S.  In Victoria I could get a renal nurse to hook me up every time (no charge), but I still feel it is too risky.

I am not going to comment on most answers here in general as I dont want to skew anyones answers to my question. But yours kind of made me feel I could help you.
If you are seriously considering calling it all off, please consider at home dialyis WITH the free nurse to hook you up.  THE HARDEST PART OF HOME HEMO IS THE HOOKING UP SO YOU WONT HAVE TO WORRY WITH A NURSE. Once hooked up the machine really does all the work and is safe. Nxstage is very easy to work with and simple to learn and SAFE. The machine almost runs itself. The hard part is hooking up and unhooking , but if the nurse does that the rest is easy . Dont give up hope .

[Poppylicious]

When Blokey was on PD (briefly) it took over our whole house.  And our lives.  Everything was about the dialysis.  Boxes, supplies, tubes, idiot delivery drivers, peeing in our only toilet whilst fluid trickled in from Blokey's belly ... He desperately wanted it to work and I didn't.  It didn't, I was relieved.  I am selfish.  However, he was happier having haemoD at Hospital because he only had to think about it three times a week and there were no reminders when he came home.  He - and I - could forget about that part of our lives for a little while and live.  He has already said that if he has to return to dialysis he won't look into HHD.  Plus, we really don't have the room for it (I'm a ClutterBunny) and I wouldn't be able to cope (I'm OCD; the PD really messed with my head and my emotions.)

I do have a fabulous Blokey.

 

[obsidianom]

When Blokey was on PD (briefly) it took over our whole house.  And our lives.  Everything was about the dialysis.  Boxes, supplies, tubes, idiot delivery drivers, peeing in our only toilet whilst fluid trickled in from Blokey's belly ... He desperately wanted it to work and I didn't.  It didn't, I was relieved.  I am selfish.  However, he was happier having haemoD at Hospital because he only had to think about it three times a week and there were no reminders when he came home.  He - and I - could forget about that part of our lives for a little while and live.  He has already said that if he has to return to dialysis he won't look into HHD.  Plus, we really don't have the room for it (I'm a ClutterBunny) and I wouldn't be able to cope (I'm OCD; the PD really messed with my head and my emotions.)

I do have a fabulous Blokey.

 

I love your English terms. I assume a "blokey" is your Hubby, or live in "special friend"? Its funny how we in the US share a common laguage with England but some of the terms are different. Our English here in the US is a bit bastardized.    "TO Sir with Love"

[noahvale]

*

[mogee]

I've been preaching the gospel of nocturnal home hemo for many years to people I meet who are in-center or peritoneal patients.  Many people are committed to the form of dialysis they have chosen whether it is working well or not.  One of my buddies was reluctant to use hemo when his peritoneal stopped clearing effectively.  He delayed so long that he died.  Some people cite reasons that are clearly rationalizations.  In my opinion, the most compelling reason for choosing NHH is the superior clinical outcome, but that is a difficult thing for people to appreciate.  I was persuaded to use NHH by the absence of dietary restrictions.  After eight years of home hemo I was healthier than when I began.

[Dman73]

My main concern is that I live alone, power outages and the water in the building being cut off. Otherwise, I have heard that when nephrologist's are surveyed as to which mode they would prefer, home dialysis wins hands down.

[MooseMom]

You also presuppose in center patients aren't capable of receiving the "benefits" your wife does dialyzing at home.

That presupposition probably holds true for in center patients who are doing the "usual" in center schedule.  I see that you are doing incenter, but self care and extended hours.  Perhaps obsidianom isn't aware that this modality is offered at some clinics.  Noahvale, do you by chance know which percentage of clinics offer self care and extended hours?  You've no doubt posted about your schedule, and I'm sorry that I cannot recall it offhand, but could you tell us (an obsidianom) by what you mean by "extended hours" exactly?  Thanks.

[cattlekid]

This topic gets my dander up.  I started dialysis on an emergency basis so there was no time for the niceties of education, informed decision making, etc.  I went straight from stage 3 to stage 5 in the course of a couple of months. 

I started with in-center when I was discharged from the hospital after my catheter placement. 

All of the "education" that I got was a drive-by visit from the PD nurse one afternoon while I was in the middle of treatment.  She mentioned PD, I told her that I didn't have room in my house for the supplies (I truly don't) and that was it.  No mention of home hemo as an option and no discussion of any possible options (more frequent deliveries?) that would have allowed me to do PD.

All education on home hemo was done on my own by visiting IHD and other Web sites.  Even then, I was getting grief from those who looked down on me for not pursuing nocturnal or extended dialysis.  Well, I was fine and dandy with short daily and since my health was good on short daily and I was happy with the schedule, that should have been it.  But nooooooooo, I was going to kill myself by not doing nocturnal or extended.  So there were a few people who I had to stop speaking to because they just would NOT LET IT GO.

So I think that you have to be VERY careful when talking about dialysis modalities.  Other than non-biased education about options, any other comments, as innocent as they may be, may come off as judgemental to those who have made other choices.

[obsidianom]

I am very interested in responses from in-center hemodialysis people here as to what reasons you are in center as opposed to home hemo. Please understand this is NOT perjorative in any way. I am not judging you for the decision . I am sincerely interested in the reasons. I would like to see if there are obstacles to home hemo that are preventing more people from doing it. If it is simply convenience please say so . If there are problems preventing you from home hemo please state them .
Thank you in advance for your answers.  I have really appreciated all of you since I joined this site and have learned a lot that has helped me care for my wife better.
I am doing this as a doctor . I would like to see barriers to home hemo come down. I would like to see more patients benefit from what my wife has experienced via home hemo.  This is not a formal study, just informational. Its something we can talk about here and perhaps in some way get out the word to others to help.

Might not meant to be pejorative, but certainly is judgemental.  You are assuming barriers prevent patients from going on home hemo/NxStage as opposed to choice/personal preference (unless you consider this reason to be a "barrier").  You also presuppose in center patients aren't capable of receiving the "benefits" your wife does dialyzing at home.

Judgemental? Not at all.  Just a doctor looking to see if I can help. I am sorry if this ofended you but it was never my intent.
The medical literature is full of studies indicating the more dialysis the better for health and survival. That is a simple fact. What is not certain is how to do it. Extended care in center is certainly one option. You are doing that apparantly and that is great. You are receiving better care than 3 days per week at the usual 3.5 to 4 hours.
My reasons for asking the original question were in trying to see if there is some type issue that may be fixable for more people to do home dialysis and get the benefits of either more frequent dialysis which is also found to extend lives and health or at home nocturnal(extended hours). As a doctor I want to use my skills to help fight this terrible disaease of kidney failure . Obviously I have a personnal stake in that I care for my wife who suffers from it.
One thing I have learned from my time here on this site over several months is how much most posters here hate their clinics. Obviously I cant say it is 100% but it is a common theme. I saw the same issues people complian about when my wife was in center for 3 months. She had many of the same complaints.
So seeing the issue of how unhappy many people are with in center dialysis I found myself wondering what could be done . I prefer to act rather than sit by and feel helpless.
My first thought was , what is stopping people from taking dialysis home and away from the clinics and the issues that upset people. That is where this question came from. I felt knowing why might give me some place to start in my interest to improve things for others. PERIOD.
If you are happy with your set up and your clinic , than I am happy for you. Many others are not. I cant change the clinics but perhaps there are ways I can have some effect on making it easier to do dialysis at home. I do talk to the company(Nxstage) a lot and have an engineering backround and perhaps modifiacations can be made to make things easier for patients at home.( I have no monitary relationship with NxStage, just find them easy to work with and talk to). (Other machines and companies may be equally easy to work with but so far my experience has been with Nxstage)
So bottom line, this was done purely out of the desire to help. I worded it as carefully as I could to try to avoid this type of argument and end up skewing the answers.
I guess the old adage is true, "no good deed goes unpunished".

[MooseMom]

I'm not sure that there is any one issue that is easily "fixable".  If clinics were open seven days a week instead of only six, thus imposing this thrice a week schedule, that would help, but that's not an issue that's "easily fixable".  It is unfortunate that people can't get good dialysis (ie, frequent dialysis) in a clinic if that's what they want.  I know my clinic doesn't offer "extended" or nocturnal or EOD dialysis.

A lot depends upon where a patient lives and what is offered.  A lot of patients don't have many choices or may live in areas where docs have never even heard of home hemo.

[obsidianom]

Send to:












































Nat Rev Nephrol. 2013 Feb;9(2):74-5. doi: 10.1038/nrneph.2012.287. Epub 2013 Jan 8.

Dialysis in 2012: Could longer and more frequent haemodialysis improve outcomes?

Mehrotra R, Himmelfarb J.


Source

Harborview Medical Center and Kidney Research Institute, Division of Nephrology, University of Washington, 325 Ninth Avenue, Seattle, WA 98104, USA. rmehrotr@uw.edu


Abstract


Patients with end-stage renal disease typically receive three 3–4 h haemodialysis sessions per week. Although available data from well-powered randomized trials are limited, studies published in 2012 provided new evidence that haemodialysis regimens with longer treatment times and/or a higher frequency of sessions might reduce the high morbidity and mortality of patients on maintenance dialysis.


This is just one journal article pertaining to the point that MORE DIALYSIS is better. Whether its longer in center or more frequent at home.

[Hemodoc]

More dialysis is the best alternative short of a transplant. Many folks do not wish to self cannulate. Since there truly is a survival benefit, self cannulation becomes a true survival skill.  With the PureFlow, supplies is not anywhere near the problem as when I was doing bags and getting 100 boxes of dialysate each month or more. I do understand how some folks don't want all of those supplies in a house, it is a true issue, but one that is not overwhelming.

If you have access to in-center nocturnal and have issues with the other things, then it becomes more a matter of preference than one of survival differences since outcomes are better with the in-center nocturnal compared to standard treatment regimens in-center.

The bottom line is that the more hemo you get, the better you feel and the better your odds of survival. There is no right or wrong answer, only what you prefer, but staying in-center with 3-4 hour treatments is not getting the optimal benefit from dialysis and it has a lot of side effects, not because of dialysis itself, but because of the WAY America does in-center conventional dialysis. I would answer without question that home is better, but again, each gets to decide what is right or wrong for themselves.

[tigtink]

I am not on dialysis yet, but home hemo would be my choice.  I've always taken an active role in my health care.  I am troubled by the reluctance in the US to let people who live alone do home hemo.  With all the technology available today for remote monitoring, I think as long as someone demonstrates proficiency doing dialysis alone they should be allowed to do so.  The benefits of extended dialysis should not be denied to someone because they live alone.

[del]

My husband has been on dialysis for 17 years now and has done PD - only type available to us without having to move -when he started.  The nearest hemo unit was over 3 hours away!!  Home hemo was not offered anywhere in our province at that time.  PD only worked for a little over 2 years before it stopped cleaning his blood adequately and he got very sick with a lot of fluid on.  By that time a hemo unit had opened onlyu a little over an hours drive from us.  He started going there and felt 100% better!!  His creatinine was always over 1000 though ( We are in Canada)  and he really had to watch the phos in his diet even with taking renagel.  He was there for 6 years and during that time home hemo started to be introduced so we started to look into it and after 6 years in center we started training to have a dialysis machine at home.  It meant going to the city - a six hr drive away for 5 weeks training.  We were expecting it to be like in center 3 times a week but we were introduced to noctural and have really found it to be the best form of dialysis he has been on.  His creatinine now is rarely over 500 when he hooks up and when he gets off the machine is is about 150!!  He does not need to take renagel anymore and he had to eat more phos because his phos was low!!! 
There are several barriers I see why people would not want home hemo:
Being responsible for everything yourself - it can be stressful so this is understandable
Being able to store supplies in your house - answer might be more frequent shipments
Having to do your own needles or have somebody else do it
Living alone and scared something might happen - in a lot of places you are not allowed to do home hemo if you live alone
Education - a lot of people -even medically people don't know about home hemo.  We have had to explain to to many nurses and doctors
There are probably many others

[Riki]

Ok, I know that the consensus is that in centre 3x a week dialysis is not ideal, and a few have said that it is inadequate.  I don't believe that this is true for every patient.  I know that my own experience has been very good.  I always felt good leaving, my blood levels were all at or around normal levels, and my fluid levels were always manageable.  It was almost like I had a kidney, even though I haven't had any kidney function at all since at least 2007.  Even if I had the option of home hemo, and I was physically able to do it, I don't think I would.  I'm one of those people who believes if it ain't broke, don't fix it.

[Hemodoc]

Actually the data is quite real. DOPPS published a report a few years back showing survival advantage for every 15 minute increase in time on dialysis. Increased frequency and duration is the key statistically. However, there are folks who have done more than 30 years of conventional in-center hemo. Not my cup of tea with the headaches and other side effects that I don't get at all with home hemo. Is it a lot of work? Well, yes. Is it worth it? Absolutely.

[obsidianom]

Ok, I know that the consensus is that in centre 3x a week dialysis is not ideal, and a few have said that it is inadequate.  I don't believe that this is true for every patient.  I know that my own experience has been very good.  I always felt good leaving, my blood levels were all at or around normal levels, and my fluid levels were always manageable.  It was almost like I had a kidney, even though I haven't had any kidney function at all since at least 2007.  Even if I had the option of home hemo, and I was physically able to do it, I don't think I would.  I'm one of those people who believes if it ain't broke, don't fix it.

I would agree with you that if this is working for you, dont change it. My years of practice have taught me that everyone is so different and some people just respond much diferently and need different care. You are fortunate that 3 times per week works so well. Most people arent as lucky and would benefit from more.

[Grumpy-1]

Was on PD for about 3 years. Infections took it's toll and I'm on in-center hemo.  Looking into home hemo, but haven't started training yet.  My concerns with home hemo are 1) self sticking - hate needles.. 2) training time required - My wife is going to be my primary buddy, but my 3 daughters are going to backups.  The training is going to put a strain on their work schedules.  And is may not work out.    Grumpy

[obsidianom]

Was on PD for about 3 years. Infections took it's toll and I'm on in-center hemo.  Looking into home hemo, but haven't started training yet.  My concerns with home hemo are 1) self sticking - hate needles.. 2) training time required - My wife is going to be my primary buddy, but my 3 daughters are going to backups.  The training is going to put a strain on their work schedules.  And is may not work out.    Grumpy

If there is anything i can do to help please ask. I am sure many others here also would be happy to help. Many of us here do home dialysis , so we can help answer a lot of questions.
My own experience is that Nxstage is easy to work with and easy to learn. The machine almost runs itself. Cannulating is the big issue and many of us can help you here. If you have a fistula , buttonholes are easy to work with and very little pain compared with sharps and new sites each time.
Training take sa few weeks but then its over and done. You then have the freedom to do it at your convenience at home.
So just ask for help , I would be honored do what I can.