People doing short daily are you still having problems with phos or have to take binders. How many days a week do you normally do?? Looking for answers as to what is better. Hubby is on nocturnal 5 nights a week for 8 hours each time. Blood results are really good. No phospahate binders and very little restriction on what he can eat or drink. Even had a few beers over Christmas plus eating cakes, cookies, sweets as well as all the other food and phos was normal pre dialysis when he did blood work on Jan. 3. Do you have lots of energy on short daily.
No phosphate binders here. Doing 6x per week at 3hours per session and have a phosphorous lab reading at 2.4 …am eating nearly whatever I want. Example might be all the great cheeses of the world, pizza yummy! Quesadillas, yummy! Lasagna! Hahaha
I asked my Dr. if Nocturnal would be better on me and he said am doing just great as-is …
[QUOTE=Gus;11863]No phosphate binders here. Doing 6x per week at 3hours per session and have a phosphorous lab reading at 2.4 …am eating nearly whatever I want. Example might be all the great cheeses of the world, pizza yummy! Quesadillas, yummy! Lasagna! Hahaha
I asked my Dr. if Nocturnal would be better on me and he said am doing just great as-is …[/QUOTE]
This is a pretty interesting report, Gus. How many binders did you have to take when you did 3x dialysis in-center? Are your txs at home exactly 3 hrs or are they between 21/2 and 3? We have started training and hope we get results like this.
During my years in-center I was taking 3-4 tablets daily…and yes. my treatments are exactly 3hours per session.
I think everyone varies in results but what I have been hearing from many patients doing daily-short seems that its the case for them to. Also, I also believe that maybe those of us who keep our prescription as required are the ones who have outstanding outcomes.
[QUOTE=Gus;11869]During my years in-center I was taking 3-4 tablets daily…and yes. my treatments are exactly 3hours per session.
I think everyone varies in results but what I have been hearing from many patients doing daily-short seems that its the case for them to. Also, I also believe that maybe those of us who keep our prescription as required are the ones who have outstanding outcomes.[/QUOTE]
Most of the in-center patients we know say they average about 3-4 Renagels (or the equivalent) per meal and 1 or 2 with phos containing snacks. So if you only took 3-4 per day total then it sounds like you were fortunate to not have to take very many even on 3x dialysis. I had not heard that any on sdd were able to reduce their phos so much with no binders, so it is news to me. Did your neph prescribe 3 hr txs or did you decide that you wanted to dialyze a little longer, because don’t most on NxStage only require about 21/2 hrs average?
Oops, I meant per meal, not per day…hehehe
The suggested prescription is 2 1/2 hours…however, I decided to average 3hours and maybe 3 - 5 sessions during the month I may do 4hours.
Keep in mind that most of us want shorter and will just do 2hours!! Also, one’s prescription may be adjusted along the way, so if the patient is missing days and they think they’re dialyzing everyday then that’s bad, so you gotta be very careful about that. Now if your really doing it as prescribed then a more accurate adjustment may be done.
At our center I was told by the training nurse that the patients on NxStage doing short treatments some still were required to take binders. If I was thinking about changing from Nocturnal to Daily then I should know it was entirely possible dad would have to take Phos Binders again.
I understand, it just varies from patient to patient, but keep in mind that finding out how much you really need takes time to find out so the results I get may not be the same for others. I really think some of you would be better off with Nocturnal than Short-Daily. It’s just a matter how you feel and how your labs are looking. If my Dr. told me “Gus, short-daily is not doing its justice for you.” What do you think I’d then want to do? I’d opt for Nocturnal dialysis(while sleeping)…why dialyze 5hours or more during the day? No way! But hey, I would really want to tryout Nocturnal, maybe a few runs and see what results I get then, but at the moment my labs are just great! Still, I’d consider Nocturnal down the road…
Maybe – body weight/size is definitely a factor. My husband weighs about 275-280, with about 40 pounds of that being PKD kidneys, maybe a few extra pounds of cystic liver, and maybe another 5 to 10 in excess fluid. He was told to expect around 3.5 hours on NxStage when he starts in a few weeks.
BTW, he still produces a large volume of almost clear urine so I don’t know how that is going to affect things. We expect it to be a balancing act in the first few weeks with the fluid, his lasix, and his BP meds.
Because of his size and the time he may require, he may eventually be on nocturnal.
[QUOTE=delphine;11862]People doing short daily are you still having problems with phos or have to take binders. How many days a week do you normally do?? Looking for answers as to what is better. Hubby is on nocturnal 5 nights a week for 8 hours each time. Blood results are really good. No phospahate binders and very little restriction on what he can eat or drink. Even had a few beers over Christmas plus eating cakes, cookies, sweets as well as all the other food and phos was normal pre dialysis when he did blood work on Jan. 3. Do you have lots of energy on short daily.[/QUOTE] Hubby doing nocturnal Fantastic, good for him, super, great I could go on but I’m sure you understand what I’m trying to say.I’d do anything to see my son on nocturnal the numbers don’t lie the proof is all their I’ve been searching high and low to find just “one” study or anything to change my mind about the superiority of nocturnal or home dialysis… just can’t find anything ! And I’ve searched and searched… John Agar ( Geelong ) sums it up the best when he writes that good dialysis is like good lovemaking… the longer the better… the slower the better… the more gentle the better and of course the more frequent the better…
Richard C/O Jessie
I haven’t been able to find studies either just testimonials. I think it’s time for somebody to think about doing a study. Hubby still haves trouble sleeping some nights but he has always had trouble sleeping some nights. I don’t think it has anything to do with being hooked to the machine.
[QUOTE=delphine;11911]I haven’t been able to find studies either just testimonials. I think it’s time for somebody to think about doing a study. Hubby still haves trouble sleeping some nights but he has always had trouble sleeping some nights. I don’t think it has anything to do with being hooked to the machine.[/QUOTE]Yes we are aware of the study being done in Canada… been in contact with Humber ( Pierratos ) and T.O. General ( Dr Chan ) to my understanding it’s a $3.3 million study, hell of a lot of $ that could have went to purchasing dialysis machines could have went well towards jump starting several clinics.
" Is more dialysis better “is the key question of the study… M. Rocco M.D. the national principal investigator said " the study will help determine if removal of more toxin is beneficial to patients on dialysis” he goes on to add and I quote " This six-times-per-week hemodialysis will remove more toxins than the standard three-times-per-week therapy,but less than the amount of toxins removed by home hemodialysis done six nights per week"
Nothing like answering the question before the study begins… They already know that the removal of toxins is the jest of doing dialysis to begin with !
I feel sorry for Dr’s like Pierratos and Chan who for what 13 plus years now have been saying all along that the frequancy of dialysis is directly responsible for the inprovement of quality of life… the more the better. Look at the Tassin group France and Seattle they have answered the studies question over and over again for what 30 years.
This study is BS period.
To me this study is a repeat of the repeat of the same question only different words that repeated before the intial repeat.
The results for this study that ends in March will not be out until 09 and before that I’d bet their will be a study to review the study itself and by the time that study is reviewed they will implement the results of 09 …but then again I’D not hold my breath unless we have another study on how to do just that. Follow… In the meantime diabetease has been designated epedemic…how many of these people will end up on dialysis oh oh …and I really am sorry to have to say that… but that’s fact. Kidney disease is starting to run away on the system. For one …I do not like what I see… just here in this community of 165,000 the unit just can’t be adding more patient’s and that’s not counting the number of people walking around with some sort of kidney failure and are not aware of it. So much for studies.
Richard C/O Jessie… and yes I am becoming increasingly pro-active
[QUOTE=delphine;11862]People doing short daily are you still having problems with phos or have to take binders. How many days a week do you normally do?? Looking for answers as to what is better. Hubby is on nocturnal 5 nights a week for 8 hours each time. Blood results are really good. No phospahate binders and very little restriction on what he can eat or drink. Even had a few beers over Christmas plus eating cakes, cookies, sweets as well as all the other food and phos was normal pre dialysis when he did blood work on Jan. 3. Do you have lots of energy on short daily.[/QUOTE]Your hubby should have ton’s of energy now …Right… Let me ask how did you come across NOCTURNAL… did you have to do your own reasearch , was it suggested to you…??? More people have to know about nocturnal before they are PUSHED towards a inferior form of therapy… we should have ALL options Do you agree ? Richard C/O Jessie
In my opinion I think its wise to do it in sequence…
1- 3x week temporarily
2 - Short-Daily (If labs are normal stay there)
3 - Nocturnal (Only if Short Daily didn’t workout)
For newcomers to dialysis its just a HUGE of leap jumping into nocturnal. Its too much stress. I really think you must take your steps one at a time.
I disagree Gus. I would flip your list 180 degrees, I think the default modality should be daily nocturnal hemodialysis. I do not think it is the job of doctors or providers to say “No” on behalf of the dialyzor. If we believe that daily nocturnal rivals a kidney transplant in terms of clinical outcomes, and I think we all believe that, then I think we have an obligation to make daily nocturnal the presumed modality and then work backwards to 3x/week incenter as a last resort.
Phsycologically, mentally…most will return to in-center. You have to give it time for the patient to understand the process and to adjust to it. The center will never know whether the patient will be a good candidate for either daily short or Nocturnal. I think that’s one of the main reasons they dont’ push new patients to these modalities right away, so basicly pushing into it is a no no for me. We know that Nocturnal in most cases is for home, but if its offered in-center that’s another thing.
I take two tums with most meals. I eat cheese and dairy. My labs are in range. I think daily nocturnal has the best clinical outcomes but I use short daily because I found I was not rested enough to work a full day. I may have been able to get use to nocturnal but short daily is a very good fit for my life. With short daily I have a high natural hemoglobin (in the 14 range without EPO) which gives me energy and I take a high natural hemoglobin as a sign of good dialysis. I think the important thing is to have all options of frequency and length and to choose the option that best fits your life. Your life at the moment because things change, options change.
My ideal schedule would be to do nocturnal on Friday and Saturday night and short daily during the work week.
I’m not aware of any evidence that people who start at home are likely to quit and go incenter - if anything I think the opposite is true: people who start at home stay at home. I think your policy would be saying “No” for people and I think that is bad policy.
I acknowledge that the reality is many people when fully informed and evaluated will choose incenter and dialyze as little as possible. That is and should be their choice, after all they could choose to not dialyze at all and different people have different goals - in this case and every other I would not make the decisions for them by limiting their options. However, I do not believe people are so fragile that they can not make this decision for themselves. I also believe that if all dialyzors were fully informed and presented with a full range of modalities there would be more people, getting more dialysis.
[quote=Bill Peckham;12063]I’m not aware of any evidence that people who start at home are likely to quit and go incenter - if anything I think the opposite is true: people who start at home stay at home. I think your policy would be saying “No” for people and I think that is bad policy.
I acknowledge that the reality is many people when fully informed and evaluated will choose incenter and dialyze as little as possible. That is and should be their choice, after all they could choose to not dialyze at all and different people have different goals - in this case and every other I would not make the decisions for them by limiting their options. However, I do not believe people are so fragile that they can not make this decision for themselves. I also believe that if all dialyzors were fully informed and presented with a full range of modalities there would be more people, getting more dialysis.[/quote]
I am sure you and many of us at home doing dialysis were in-center for sometime and it was us out of our own mouths that asked for home dialysis and when we did we were educated on the available options.
The only only thing that should be done is let new patients know that these options are there and educate them the difference between all options. Media, Phamplets, articles, movies should be shown in-center to promote and help new patients make the move. Its up to them to decide.
The few bunch here like you and myself are way ahead of people who just start dialysis and sometimes we may think that our mind set is the same level as theirs, but its not. Their newcomers that need alot of hand holding…
[QUOTE=Bill Peckham;12063]I’m not aware of any evidence that people who start at home are likely to quit and go incenter - if anything I think the opposite is true: people who start at home stay at home. I think your policy would be saying “No” for people and I think that is bad policy.
I acknowledge that the reality is many people when fully informed and evaluated will choose incenter and dialyze as little as possible. That is and should be their choice, after all they could choose to not dialyze at all and different people have different goals - in this case and every other I would not make the decisions for them by limiting their options. However, I do not believe people are so fragile that they can not make this decision for themselves. I also believe that if all dialyzors were fully informed and presented with a full range of modalities there would be more people, getting more dialysis.[/QUOTE]I have to agree Bill from what I’ve seen here in Canada the choices are not “ALL” put on the table and if so thier is very limited information and the tendancy has been to put PD at the top of the list. That I find neglectfull … people ( who are stable ) need to have the choice. Yes I also believe that if they were given the choice to have more dialysis so much the better. Richard C/O Jessie