What proof is there that patients require long hours of dialysis (48 hrs. per week with nocturnal) - is this an assumption/theory or proven fact? Do patients on nocturnal live longer than patients on shorter dialysis? Please provide documentation.
All you have to do is search slow nocturnal dialysis and you’ll get tons of articles printed about the benefits. However, if you don’t want to do that when I started my search for information on nocturnal I kept a copy of all the information I got from websites and Nephrology magazines. It’s about 68 pages e-mail me your address and I’ll send you one. At the top of the sheets you’ll see where I got the article on the internet and/or what Nephrology magazine the article came from. My e-mail is Marty1@infoblvd.net
It’s a proven fact more dialysis is better.
I have read a number of articles on nocturnal dialysis. Would appreciate if someone could directly provide documentation to my specific questions on this board.
Welcome to the board. If you’re looking for documentation on patient outcomes related to daily and nocturnal dialysis, you can download a PubMed bibliography right from this site (http://www.homedialysis.org/v1/resources/) that includes abstracts from each article, so you can read them and see the evidence for yourself.
To my knowledge, only one study (the HEMO study) has found that there MIGHT be ANY limits on how much dialysis is needed–and that study was, in the opinions of many nephrologists in the field–poorly designed.
Healthy kidneys work 1). 168 hours a week (24/7), and 2). continuously. As you’ll see from the bibliography, numerous studies have found advantages for patients in terms of both quality of life and survival for nocturnal and daily hemo–both because they offer MORE dialysis and because they are more continuous than in-center hemo. With nocturnal home hemo, patients have been sleeping and eating more normally, requiring phosphorus SUPPLEMENTS instead of binders, needing fewer blood pressure medications, regaining their libidos, and even returning to work.
These studies, to date, are small and not long term. The National Institutes of Health (NIH) is sponsoring a study that supposedly will place these treatments into a head-to-head comparison–but results are not expected until 2008 at the earliest, and the study will rely on a controversial method to “randomize” patients to treatments. Another effort to compare benefits is a registry of all daily and nocturnal home hemo patients, and you’ll hear more about that on this site soon.
Thanks to you and Marty for the referral to articles, but I would like to know if someone can quote on this board any facts about better mortality with nocturnal or daily. As you said, a study is forthcoming and will not be complete until 2008, so does that mean there are no definite facts proving better mortality yet? Also, does the same apply to statements that in order for dialysis to be efficient it must be much longer and more continuous?
The reason I ask these questions is because, typical in-center dialysis is very lacking in quality/efficiency. It is a one size fits all treatment as with limited company education/training staff do not know how to deliver an efficient tx. How do we know that shorter dialysis is not efficient enough when techniques for individualized dialysis are not utilized? Tx techniques, machine options, patient education etc are very underutilized, so we do not have a true picture of what a balanced, individulaized tx can do. Also, if the tx is not balanced/indivdualized to begin with, how does longer dialysis = better dialysis?
I think everybody is different and I don’t believe one size fits all…for instance, 3x a week high flux on F80A dialyzer is an overkill for most patients doing only 3 hours…after somtime the patients life will degrade because the body can’t keep up with the stress of doing 3 hours on a high flux…resulting in nerve damage and other problems…
SLower more gentle dialysis daily might be the answer to longivity on dialysis…BUT not longer hours 3x a week!
I think it all boils down to how the patient feels…a smaller sized patient may only need to dialyze alot less than the heavier patient, so really one size DOES NOT FIT ALL!..
From an article written by Carl M. Kjellstrand. "Dialysis has become increasingly unphysiologic. The early hemodialyses were long affairs 8-12 hours. In the USA, because of commercial pressures, and in other countries because of budget constraints, dialysis was increasingly shortened to the current 2 1/2-3 1/2 hours only one fourth as long. Because of the preoccupation with dose (Kt/V), it was erroneously assumed that as long as the result of the numerator, K x t, was maintained, all was well. This assumption is wrong. A greater K cannot compensate a short t. A long t is necessary for fluid and sodium removal, and thus, blood-pressure control. Short, ultrafast dialysis can never maintain the homeostasis necesssary for extended survival and decreased morbidity. In Japan, as in the USA, short dialysis is dangerous. Overall, Japanese patients have only one third the risk of dying in a given time period compared to USA patients; however, the Japanese patients who dialyze as short and fast as USA patients, have the same awful death rate as in the USA. In the Tassin, France clinic with the worlds best survival, patients are still dialyzed 8 hours. Practically none of the patients is on medications for high blood pressure, compared to some 70% of all USA hemodialysis patients. Homeostasis cannot be maintained with short, fast dialysis. Just as speed on the road kills, so it does in hemodialysis.
Most of the complicated dialylsis equipment with “sodium ramping or profiling” and hematocrit monitoring to avoid shock are necessary ONLY because of dangerous fast dialysis. This is absurd!
However since the early days of chronic dialysis who have not been satisfied with the poor results of chronic hemodialysis as generally practiced. Since that time, close to 100 articles and abstracts dealing with daily hemodialysis, from over 30 clinics and including observations of over 250 patients, have uniformly showed improvement in hematology, blood pressure, nutrition, hormone levels, phosphate control, problems during and between dialysis, quality of life, hospitalization, and rehabilitation.
The worlds best long term survivals are those achieved in Tassin, France with very long slow dialysis and with an average Kt/V of 1.79. A young patient in Tassin has only one forth the risk of dying during the first 10 years of dialysis, compared to a young dialysis patient in the USA. The results for older dialylsis patients, particularly vulnerable to the many side effects of short, hypereffective dialysis is even more astounding. A 65 year old dialysis patient in the USA has a mortality risk 12 times greater than a 65 year old patient in Tassin. The preliminary data from long, nightly dialysis, the most effective and physiological dialysis show even better survival. The very preliminary survival results of shorter, daily hemodialylsis appear to be equal to those in Tassin.
This article came from www.multi-med.com/homehemotoday/vol2/suffer.html
I’ve been on dialysis (hd in center) for just over 3 yrs… I have 3, 3 1/2 hr. txs. a week, and I’ve never missed a tx. or even shortened one. My labs are perfect, and my hemoglobin now is 11.9. My labs are perfect, I don’t even need a binder. I also don’t take any meds. other than the epo, Hectoral, and Venofer given at txs… I have no other health problems, and don’t even have the need for fluid removal, and yet I don’t feel any better than I did a year before dialysis. Actually two years before the start of dialysis I started telling my pcp that something was wrong because I didn’t feel that great, and was freqently fatigued.
When pts. don’t feel well on dialysis often it is blamed on things the pts. does/does not do, but in my case I feel tiried/sick all the time in spite of doing all the right things.
The way I see it is that in center dialysis is not removing all the toxins and so it’s a constant struggle to feel good and have the energy a person my age should have (I’m only 49). I’m at about the same level I was a year or two prior to dialysis when I had only about 75% function. I even upped my tx. time. My latest urr was 78%, but clearly judging how I feel most days that just isn’t enough. I’ve read that most people on slow nocturnal get much higher clearance rates. Is that true? Is that why they feel better? Also, I don’t have fluid removal yet and so removing any fluid (to make machine run) really wipes me out. I can’t even hang onto fluid during tx. so giving me back saline doesn’t work, and that becomes a really difficult problem How would something like that be handled if I were doing slow-nocturnal, or would it even matter since the fluid would be taken at a much slower rate? I’m just not cut out to be a couch potato or nap taker; it’s going to drive me bonkers living without energy! Lin.
Lin, Yes, nocturnal patients do have higher URR rates. I do think but I don’t know for sure nocturnal patients have less fatigue because they not only get better clearances but the dialysis itself is gentler. My dad got knocked out on in-center treatments and his BP was always extremely low. (Which can cause fatigue). I was worried about nocturnal thinking can I deal with the low BP problem. What if he passes out during sleep? If were not awake how will I know he needs to be given saline? All the worry for nothing. The slow fluid removal stopped his BP crashes. From dad’s experience the slow treatment doesn’t make him feel worn out., but then to he also started sleeping and eating better on nocturnal and this probably also played a role. I don’t know if this plays into it or not but I think either consciously or subconsciously there is at least a small amount of anxiety while being in-center. Especially for dad because he doesn’t warm up to people right away and he certainly worked himself up because he had to sit there while the sun was shining and he wanted to be outside. I also think being comfortable with the treatment at home he doesn’t have an anxiety wear out. You would crack up if you saw us somenights. Here I am working away drawing blood and letting it circulate through the machine, calling the center with BP etc. hooking dad up to the machine and he is sound asleep oblivous to it all.
Oh Marty, you hit the nail on the head! Anxiety plays a very important role in our care. I’ve always been a tad on the cautious side, being very carefull to not place myself in unsafe situations. Then I start dialysis and I’m supposed to trust blindly everyone that cares for me being told “you can trust us”, and although most were trustworty it’s the one’s who weren’t who caused me stress beyond belief. My bp is very high when I go to dialysis, and it’s not fluid, it’s stress. Of course staff has been taught that if pt. has high bps coming in it means they need fluid removal so we politely argue and there is more stress. Having pkd and not needing fluid removal has made things even harder because staff and doctors too want all pts. to fit into a dialysis mold; they have an idea of what a pt. is supposed to be, and they try continually to squeeze me into that mold, and I just don’t fit in. When I would read your posts about some of the same things happening to your father I would think, gosh I’m not the only one that has these feelings, or the stress of wondering and worrying how things will go, and how I will feel.
I think I’m trainable, at least I’m willing to try, and I can’t help fantasizing about how wonderfull it would be to not have to explain myself or argue with anyone. It must be wonderfull to just set the machine and then relax!
Will there be pics on this site, and if so I think you should post one of you and your dad, perhaps setting up a tx… or your set-up for supplies ect… People would see that and couldn’t help but feel encouraged. Lin.
Lin, You don’t even have to worry about being trainable. All you learn to do is set up the machine and hook yourself up. You wouldn’t even need a high school diploma to do it. The truth is (and in-center patients can’t see it or accept it is) the machine is what protects you. This is true in-center or at home. If this truth were not accepted by those who KNOW dialysis you wouldn’t see nocturnal programs nor would you see someone like me out in the boonies 5hrs away from the nocturnal center, 2 hrs away from a hospital merrily running along on home dialysis. Humans error it wouldn’t be safe to do it at home or in-center if you had to rely on a person never making a mistake. When I was taking dad in-center and saw patients cramping, crashing, getting sick. cold as hell etc. I thought how am I going to deal with this. Well the truth is you don’t have too. Most of the problems you see at center have alot more to do with the rapid treatment and not enough dialysis than anything else. Plus a lack of communication. When you train for home dialysis your nurse and you get to know you and know you well. You are there only patient for the whole training period. I can remember a patient e-mailed me one time and was telling me all the dangers of dialysis, I was trying to calm her fears with the truth and she would have no part of it. Finally I said well what do you think they send us home to kill ourselves. You can drive a car with out being a mechanic. You can do a dialysis treatment without having medical knowlege.
Lin, I sent Dori some pictures of the bedroom with the set up. I also sent my checkbox setup instructions. I don’t know how useful they will be to someone who has never been introduced to the machine. By the way I dug into the bill board thing. I can do it and I really want to but there is something holding me back that I can’t get past. I want the billboard to say Home Hemo IT IS YOUR CHOICE log onto this site. Here is what is holding me up. The patients in my area are in your predicament. It’s there choice but it isn’t there choice because we don’t have available programs. So is my message the truth or a lie or just smoke.
Marty, I hereby dub you the “cheerleader” for home hemo! Billboards, heck I wish you could do an infomercial lol Maybe all those centers that claim they don’t have programs because of a lack of interest can hire you to go on the boob tube and pitch home hemo. Gosh, if one day I turn on the tv and there you are I think my heart will skip a beat. Seriously, there really aren’t a lot of people on home hemo, so the ones who are and are doing so great have the burden of getting the word out, or so it seems. In any case, you could just put on the board “If you want home hemo speak out!” Call 1-800 I want it, and I want it now!
In regards to the machine and training I think I could do it. After all, when I’m in the unit they rely almost totally on the machine, and that I could do too. Whenever I’ve resisted learning to use a machine my family is quick to remind me that I use machines all the time, everything in the house, plus tiller, weedwacker, vehicles, ect… When I thought about that knew it was true. I used to only use machines that were in the house/kitchen until I thought about what my husband and sons said, and it made sense. We all use machines every day, and the dialysis machine is just one more to conquer. I used to be afraid of the computer too, but when the need arose to find out about my medical condition and dialysis I dug right in. If we learn to use machines for other things, we can learn to use them for txs… After all, nothing is more important than life!
I’m looking forward to seeing the pics… I think the setup tips will mean something to me also as I normally sit at tx. and watch whatever aspects of the setup and tx. that I can hoping it will sink in. It’s been my experience that I tend to make things out to be complicated, and once I learn wonder what I was ever afraid of, and I suspect a lot of other people are going to be the same way.
I just wish that providers and politicians would realize that the lack of home hemo programs is holding a lot of us back. There are younger and younger pts. on dialysis, pts. who have the need to have a schedule and txs that allow them to be productive. As always Marty, You’re super. It really is a very unselfish person who finds something that is good, and then endeavers to share it with all she comes into contact with. Lin.
Lin the only thing that stops me at all from pushing pushing and pushing to help patients get home hemo is the programs aren’t there for them to get and I can’t deliver that. It’s not that I’m not selfish its just that there is no reason to be selfish. What benefits others in the end benefits us all. If I can get a program in our area, I won’t have to travel so far and I’ve helped others at no extra cost to me.
There’s a couple patients in my clinic who know I am gonna aim for homehemo…they’re uncertain or scared abit but at same time they wanna see me make my first move so that they can jump on the same bandwagon…
It takes a brave soul to show the way and the others will follow…
Guest, Good For You. You’ll do just fine I’m sure.
While the article cited is interesting, it is not specific enough or conclusive. Would like to see facts, statistics. It is essential to point out, as has been stated previously, that comparing long dialysis to poorly performed in-center dialysis is not a fair comparison. Jiffy-lube, assembly line, one size fits all dialysis is not at all the same as ~~ individualized, shorter 3x per week txs (but not too short, average 5 hrs), efficient dialysis, employing simple, but necessary tx techniques utilizing a quality machine that offers balanced proportioning and stable conductivity.
I feel we should be looking at the real reasons in-center care is typically so poor, contriibuting to unwellness, depression, loss of productiveness and mortality. Is long dialysis really better than efficient dialysis? If one can get the same results as nocturnal in 1/3 the time expended, while fully awake and alert or resting if desired, in-center or at home, same labs, excellent energy, improved nutrition, no hypotensive episodes etc., would one still want to spend 48 hrs a week on the machine and sacrifice normal sleeping patterns? If you say, yes, I respect that, because I believe in choice- choice of the machine and choice of modality. But it is my sincere desire that eveyone take an honest look at why the push to long dialysis? Why have the clinics been allowed to get away with such poor, inefficient dialysis txs when it is possible to do dialysis efficiently and correctly?
ED I haven’t seen you post for a while, the questions are the same as they have always been - Is it really fair to ask for double blind evidence of the benefit of more frequent dialysis while at the same time accepting anecdotal evidence of “efficient dialysis”? Why should the report of a solitary care-giver be given more weight then the reports of numerous patients? I think this link provides compelling evidence of the benefit of more frequent/longer treatments:
(note this bill was reintroduced into the House as HR 1004)
Where is the study that suggests the existence of “efficient dialysis”?
Is that the poster who claims to have a better machine?
In any case, I don’t believe short “jiffy lube” dialysis can be efficient, true it can be more efficient than it is, but not as efficient as say the way normal healthy kidneys do, 24/7 and slow. My neph. even told me the kidneys are more efficient during sleep, when one’s body is supine.