Dialyzing alone at home is quite a delicate issue and persoanlly I do think its a high risk for both the clinic and associations. How would the community feel that one of our home dialysis members died while on dialysis alone at home and only if there was someone watching he/she could have still be alive today. Who takes the fault then? Do we sue the clinic and or associations…Would you happily sign a waiver?
How does the community feel when 2 or 5 or 10 people for every hundred people on dialysis, die while on conventional incenter dialysis and if only they were getting a proper dose of dialysis at home, even if at home alone, he/she could still be alive today?
Dialysis isn’t deadly, CKD5 is deadly. Hemodialysis treats CKD5. Access to sufficient hemodialysis should not depend on ones zip code or marital status/living arrangements.
Bill, you didn’t give an accurate answer. Generally speaking more frequent dialysis is good, but how would you solve the dialysis alone issue at home?
How would the community feel that one of our home dialysis members died while on dialysis alone at home and only if there was someone watching he/she could have still be alive today. Who takes the fault then? Do we sue the clinic and or associations…Would you happily sign a waiver?
[quote=Bill Peckham;16636]How does the community feel when 2 or 5 or 10 people for every hundred people on dialysis, die while on conventional incenter dialysis and if only they were getting a proper dose of dialysis at home, even if at home alone, he/she could still be alive today?
Dialysis isn’t deadly, CKD5 is deadly. Hemodialysis treats CKD5. Access to sufficient hemodialysis should not depend on ones zip code or marital status/living arrangements.[/quote]
Gus I would assume people would feel the same way they feel when anyone dies doing what they intended to be doing. People die while hunting, hiking, swimming, even walking alone. And one can imagine that if they had been accompanied maybe things would turn out different. However, adults get to make these decisions for themselves and adults live and die with the consequences. Adults are responsible for their own decisions.
However, I dispute that my initial answer was not accurate or was evasive. My initial answer stands and is spot on - it is absurd to worry about what might happen while ignoring what is happening. It is not the community’s job to fret about how I conduct my life and/or my renal replacement.
Hi Folks
Right On Bill and Rich
Gus
We have had posters who were on this site die. Maybe you don’t recall ,EPOMAN, LeafSunBear just to name two off the top my head… Gus I’m 51 If I want do dialysis on my own I will, it was a A---- wipe dr that put me on dialysis without my or my wife’s consent. And I’m told by Davita and the not the dr but a manger for the dr 's group that I just be happy and deal with it. Gus I didn’t fight my whole life overcoming spina bifda just to have some dr in his 30’s make the call for me on how I will live my life. While with davita which was the worse center, just like Rich said, a day or so before the state was comming I find it funny how these centers hear aheard of time. The nurses and techs came around have everyone sign paper work that we had been taught what to do in case of a fire. The only thing I saw on fires was the paper I was told to sign or else. It took a dr to step in between me and the head nurse. We or at least I was more than willing to confront someone that theaten to cut the tubes right there and then. Davita was well aware of my stand if it meant going home and dieing so be it. My new center a non profit also knows my stand. Gus I have lived a lot longer than I could have dream. So I have nothing to lose, if I’m push I will come home and I will go into crash mode and I will get everyone I know to record for youtube so the whole world can see how this country has gone from one of greatest to one that I really don’t want to be around that long to see where it going, it isn’t going to nice.
Don’t mis read this I’m not mad, I just telling it lke I see it, I have no real hope for this country down the road. And it not due to people not working hard to make things better. But there are some in this country that would be happy to see it like pre war Germany in the 20’s and 30’s. Where we do away with the sick or those unable to care for themselves.
Bear with my spelling etc, it been a long day (5 am east maybe 9 pm)
thanks
Bob O’Brien
[quote=bobeleanor;16639]Hi Folks
Right On Bill and Rich
Gus
We have had posters who were on this site die. Maybe you don’t recall ,EPOMAN, LeafSunBear just to name two off the top my head… Gus I’m 51 If I want do dialysis on my own I will, it was a A---- wipe dr that put me on dialysis without my or my wife’s consent. And I’m told by Davita and the not the dr but a manger for the dr 's group that I just be happy and deal with it. Gus I didn’t fight my whole life overcoming spina bifda just to have some dr in his 30’s make the call for me on how I will live my life. While with davita which was the worse center, just like Rich said, a day or so before the state was comming I find it funny how these centers hear aheard of time. The nurses and techs came around have everyone sign paper work that we had been taught what to do in case of a fire. The only thing I saw on fires was the paper I was told to sign or else. It took a dr to step in between me and the head nurse. We or at least I was more than willing to confront someone that theaten to cut the tubes right there and then. Davita was well aware of my stand if it meant going home and dieing so be it. My new center a non profit also knows my stand. Gus I have lived a lot longer than I could have dream. So I have nothing to lose, if I’m push I will come home and I will go into crash mode and I will get everyone I know to record for youtube so the whole world can see how this country has gone from one of greatest to one that I really don’t want to be around that long to see where it going, it isn’t going to nice.
A youtube video sounds like a plan. Let the whole world know how you feel about your right of having dialysis alone at home. If your someone who was having dialysis at home then was kicked off the home the home dialysis program you should certainly make a youtube video concerning that.
Don’t mis read this I’m not mad, I just telling it lke I see it, I have no real hope for this country down the road. And it not due to people not working hard to make things better. But there are some in this country that would be happy to see it like pre war Germany in the 20’s and 30’s. Where we do away with the sick or those unable to care for themselves.
Bear with my spelling etc, it been a long day (5 am east maybe 9 pm)
thanks
Bob O’Brien
I know what you mean, but we have to come to a compromise with clinics that don’t allow solo dialysis at home. Some clinics solve this problem with remote monitoring. How can other clinics solve it? Should they all offer remote monitoring? Should they re-write the agreement papers we sign? For the most part looking at their legal policies might help in coming into a compromise that will allow solo dialysis at home. In Davita’s case, I think one must post a video on youtube and let the world know what happened, especially if your one of the people who were kicked off the home program.
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Hi Charles,
Well, I would certainly never suggest that anyone who isn’t comfortable dialyzing at home be forced to do so, just that the option should be there for folks who feel they’d be safer at home alone getting optimal dialysis than in a center getting “adequate” treatment.
As far as lawsuits, we’re not aware of any related to home dialysis. But there have been MANY lawsuits related to in-center HD. So, if the lawyers are concerned, the clinics should send everyone home! 
Oops, forgot to add: So glad you’re enjoying the Webinars! We’ve found a new vendor that has similar features but is much more stable and professional, and hope to debut that later this month.
[quote=cehill;16663]It is my opinion though I am not an attorney that legally NxStage or Davita(any dialysis provider) do have the right to control our dialysis whether we like it or not; I would think they both could be sued if they knew we were dialysing alone and we died as a result of not having a helper available. I think the ramifications are large including approval by FDA to be in question.
Exactly, if we get trained to do home dialysis we agree with our clinic and sign papers agreeing to the terms and conditions we abide to. Our clinics are taking the responsibility for patient’s outcome. However, if the clinic didn’t allow solo dialysis at home and you get caught breaking that agreement then who’s fault is it? Of course, the patient! Don’t you think most people don’t understand the state the body is in when on dialysis and have blood outside your body? This definately no walk in the park and wouldn’t compare solo home dialysis to someone living alone without esrd.
I learned early on that I could do my dialysis alone without assistance; however I found it to be scary by not having someone in the home with me. I usually have someone available and on site. I most defiinitly would not do nocutrnal with out someone available. I respect my rights and the rights of NxStage and Davita to withhold my option to do Home Hemo with the NxStage.
Yes, sure is possible and have to confess that I experimented this a few times to analyze my thoughts about this and concluded that its very very unsafe. Certainly wouldn’t cut corners or try to change the rules in order to take advantage of doing solo hemo dialysis at home. In the current state of technology no. Perhaps once nano hits into the market it may perhaps be acceptable. I can say I do solo, but there’s some people in the house. Now thats safer…
I think I understand Anna and others with the same opinion. That is not for me and I think they should revisit this issue. Thank you Dori for what you do; I am enjoying the presentations. Keep up the good work.
Charles
For those people who still believe in solo hemodialysis I think they still have that benefit by just going to clinics that offer it. There might not be many that do but am sure if research shows that solo home dialysis is as safe as with having a partner then I think more and more clinics would be willing to offer it. Just keep advocating for it and perhaps make some youtube videos proving that solo home dialysis is safe.
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Gus, I’m pretty sure that the relative safety of dialyzing alone is always going to depend on who is doing it. The numbers are unlikely to ever get big enough to study. If you don’t feel comfortable doing it, don’t do it. But folks who DO feel comfortable–and don’t have partners–should have the option to talk with their care team about whether it might be appropriate for them.
Agree and think more patients would be candidates for solo txs if training was more comprehensive. I got jiffy lube training for home txs similar to the way education was so limited in clinics I have been in. Education is everything! Something I have discovered is, just because one is a neph or nurse does not guarantee that one is a good teacher. Clinics should have competent nurse trainers. Ever since I have been on dialysis, I have gone through the stress of my life, because I have had to constantly re-evaluate/re-learn dialysis info I was given by the “professionals” that was incomplete/.inaccurate. It is beyond me how so many ESRD professionals could be so poorly educated. I don’t know about other fields of medicine- maybe the same thing exists that I have experienced in dialysis. But it is very victimizing when dialysis professionals are so poorly educated - it holds patients back. Again, education is everything, and if education was what it should be, the disease, tx and capacity to do txs solo would not be so threatening- patients’ health would be so improved and it would be possible to return to normality in numerous ways.
Hi Jane,
If you haven’t already looked at the Core Curriculum for the Dialysis Technician, which you can get as a free pdf download from our Medical Education Institute website (http://www.meiresearch.org), you might want to go through it. This is the manual that is required in some states for patient care technician training, and it gives a lot of the WHY along with the WHAT and HOW.
[QUOTE=Dori Schatell;16668]Hi Jane,
If you haven’t already looked at the Core Curriculum for the Dialysis Technician, which you can get as a free pdf download from our Medical Education Institute website (http://www.meiresearch.org), you might want to go through it. This is the manual that is required in some states for patient care technician training, and it gives a lot of the WHY along with the WHAT and HOW.[/QUOTE]
Thanks, I do have it as I recently downloaded it. I had asked a dozen times in clinics I was in if they had a copy I could read, but no one ever provided it to me. I will be reading it when time permits. I did skim through it and noticed the part where it speaks about which direction to cannulate needles. As you know, from Prof. Agar’s recent web seminar, both should go up. I happened to notice where you cite the ven up art down method. So looks like that may of changed, but I look forward to reading this text to fill in my knowledge gaps. How many states use this text to train techs? All this time, I did not know that you wrote it. How did you go about writing it?
When it comes to machine training, feel the machine companies need to do a better job of facilitating training by providing better training materials and classes for clinic home trainers and patients.
Hi Jane,
When we did the last edition, we didn’t know about Dr. Agar’s thoughts on needle direction. Next time, we may update that. My understanding is that most facilities use the Core Curriculum for training (not sure how many states), but reading a book alone is never enough to get folks up to speed–having a preceptor who is patient-centered and knows his/her stuff is also crucial, and training is not necessarily given enough time…
As for writing it, we first put it together with a multidisciplinary committee of authors & reviewers in 1996, and there have been 2 major revisions since then, most recently a couple of years ago.
Interesting, I see. Well it would be nice if there were more experts working in dialysis. I’ve met a few and it is so obvious that their knowledge level far surpasses the average dialysis neph, nurse or tech. The majority of staff I’ve had probably never read the Core Curric. But alas it all comes back to the “E word” = enforcement. Clinics go into business with no thought of quality care.
I really have to disagree with you although you are correct there isn’t enough education. Those who do solo treatments are those who have gained the confidence to do it on their own. At first perhaps they took more chances, but as with anything else with practice comes more capability. And after a short time they can do their tx solo.
The question is whether people have a right to treat alone. If the clinic disapproves and is concerned about liability, the dialyzor can always sign a waiver to hold harmless. At a recent meeting with NxStage of the 8 patients present 6 do tx solo. That’s obviously not a large enough sample to come to any conclusion. But I think that more dialyzors are solo than you think.
I think we should do everything in our power to make some of these individuals lives than than pleasant. I do not see why she could not be given a monitoring system and a blood sensor. Individuals have the right to deny medical care with a signed piece of paper, why not in dialysis? This crappy attitude of “I know what is best for you” is for the birds. Guess what, you do not know what is best for me. In addition, I am more than happy to tell you about it. Quite honestly, this situation does not pass the smell test. Who died and left them in charge? If I did have self dialysis, I would never tell them, I am not that stupid. I know that we have people that have self-dialysis, I am not that dumb to believe that it does not happen. These people fail to realize that having a partner each and every day for hours on end, is very tough mentally on the partner or spouse. I would love to see these people walk in our shoes for a day, week, or a month, they would be singing a vastly different tune. This is an industry that is filled with, “Do as I say, not as I do” attitudes. I hope they enjoy their power, but, with the wearable artificial kidney running in human clinical trials, that power is soon going to be coming to an end.
Hi all,
I am following this thread with a lot of interest and concern.
I am a 32 year old person in India on nocturnal home hemo for the last 2 years. I have a tech that comes home every night, starts dialysis for me and sleeps in the same room and closes treatment in the morning and leaves. Same routine every night - 6 nights a week.
Over the months, I learned the starting procedure and am now able to start treatment on my own without ANY help. And so, I have been doing this before my tech arrives. He sometimes comes a few hours after I’ve started my treatment.
However, the important thing is the emergency facilities here are nowhere near those available in the US or Australia. There is no facility for someone at the clinics to monitor my treatment remotely. Should something happen, it could take about 20 minutes to half an hour before any professional help arrives.
I have my parents and brother at home most of the time but they have no clue of what to do in an emergency.
I love the independence self dialysis offers me but I am worried about the risks involved.
What would you advise me?
Thanks
Kamal
Hi Folks
Things are happening folks, we need to take a stand and write /email/talk to our reps . I have been both emailing and talking and have sent fax to my state reps in Harrisburg Pa. I’ve also emailed my state rep in DC and filed with EEOC. The issues are not just doing tx at home by our selves if the person is fit and has a good house. We wouldn’t want someone that would go home and then not do the tx’s( skipping or faking #'s) or has living condition that would risk health( Too many pets and/or not keeping place clean or at least a room set aside free from pets and clean) When I first started home tx , I really had no choice, it was come home or stop dialysis end of story due to the conditions at the center. And the only program that was offer was a short daily. So I did home tx for a yr alone, before I found the only center that offer nocturnal.In talking to some people who work in dialysis they will tell the same thing. That the way things are set up now is no way for dialysis in the best concerns of the people on dialysis.
Also the other issue is getting back to work. Part of the reason I did things , I wanted to get back to work. And got into a nocturnal so I could try and work ,no matter what the job time line would be, I want day shift( 6 am or 7 am to 3 pm or 4 pm),only to be turn down without the company saying why, this is where my state rep comes into play. After emailing ,talking , etc. After about two or almost 3 wks, my state rep calls me and tells me that the company had told him , that I would have been offer the job. But the reason at least what he had told me , the company had been told by the company dr, that I was on 3x a wk dialysis in center. And I would not be able to work a full time job…Needless to say I helped to make clear to my state rep what I was doing, when he found out what all I do just with home dialysis. He (state rep) wanted to know why I wanted to go back to work in the first place. I said the bottom line $$$$$.
So this is about more than just doing tx at home in a way that each person along with his/her team know that the person can do what is best for the person over all health. For me I was happy doing tx on my own, but I’m happy with doing tx while I sleep with my wife next to me. But what will finish the story will be that all the work I’ve done to get home and get on nocturnal ends with me getting a job. That has always been the plan. I will give my state rep a set time to reply, after that I will send out my story to folks in DC ( Joe Pitts/ Phil English) and my states AG office health complaint dept. And to the local papers and news channels.
You know it has taken a good bit of time to put this together ,but I wanted to have, first to have the way two centers handle things. Night and day in the way these centers talk or not talk to a person. And I have always been told that that part of dialysis company would be to help people get back or stay in a job. The first center couldn’t care about job placement. The second center has been more than willing to work with me in getting back on my feet. I don’t think this is a Ed issue, as it is a people thing. The folks in the first were and are driven by what is best for dialysis company only, the second I’m sure care about company but if the person who is there as a consumer on dialysis can be made more complete by getting a job or what ever . Then the people working there will try and do what they can to help. This to me is just the mind set of where a person works.People are just going to do the right thing if they are good people or they will not if they are too into the company first consumer second.
Thanks
Bob O’Brien
As I see it, patients are individuals with differing levels of abilities. Some come to dialysis with more technical ability so do not fear various aspects of the machine operation as much as others. Or some patients have more of a daredevil personality and are more apt to launch into things without a second thought. Some patients are limited by their physical condition for how much they can self-navigate the tx. Make no mistake, dialysis can be quite dangerous if a patient doesn’t fully know how to handle various situations or has a crash. That’s why I say education is key- the better trained the patient is, the better he can handle or avoid problems. I do not doubt that there are those who do solo txs. I’m for it if they are capably trained and know how to handle every eventuality. I am more concerned about the daredevil type who is ignorant of what can go wrong and is unprepared or the patient who thinks he was trained well when he actually was not.
When you treat solo, how do you deal with the occasional cramp or do you keep your goal so high above your weight that you never cramp? Also, one could have an underlying condition when one gets on the machine and not know it resulting in a heart attack or stroke, so what is your plan should that occur? And one could start to choke if food taken in on the tx went down the wrong pipe. Or one could have a leak while napping ( either dialysate from machine or blood from machine or access) which take quick thinking, so will you be in control if it catches you unaware and you are well on the way to crashing? My point is, these scenarios are not going to happen every tx, but what’s your position should they occur and you are alone?
Hi Folks
Maybe the issue is that we need to confront things on two fronts… Getting more money for dialysis providers at the DC level. I can see working on that if units meet set conditions. While each of us work on state level if our state laws are not in the interest of the consumer. Now that I’ve made contact with one state rep. on issues that Find just unnecesary. . Why in the world each center gets to treat a person how they see is just wrong. This whole time I thought that CMS made all the rules that told the state how each unit should be , not just as to bloodcounts. But conditions at units (clean, no bloodly chucks laying around), and letting each person know not just when to be at a center ,but of all the tx choices. I realyy don’t think it takes a ton of money for a DR to tell a personof web sites etc. Unless in doing so it might cut into the money the center gets if a person wants to go to another center or do home dialysis. But it seems like the centers get payed if a person is doing home dialysis , which makes no sense.
Thanks
bob o’brien