One Major Conclusion about Dialysis After 7 Years.......

[NDXUFan]

The major conclusion is that the body is made for Nocturnal dialysis, not short-treatment dialysis.  In addition, the body needs dialysis, at least 5-7 days per week.   Anyone in the dialysis industry who tells you differently, is not being intellectually honest.

[obsidianom]

The major conclusion is that the body is made for Nocturnal dialysis, not short-treatment dialysis.  In addition, the body needs dialysis, at least 5-7 days per week.   Anyone in the dialysis industry who tells you differently, is not being intellectually honest.

Do you have research to prove this or is this just your own experience? I agree that more is better, but why does it have to be nocturnal? There are several ways to receive adaquate dialysis time and frequency.
Yes my wife needs dialysis 6 days per week as she feels rotten on the days off, but I cant expect that to be the same for everyone. Some do fine with a lot less. Some do better with longer treatment but fewer days than her.
When you say "major conclusion" , it would be good to give info on where the conclusion comes from.
I agree the industry tries to do the minimum to make profits. They are in it for profits and the medicare guidelines of 3 times per week are only there because of the cost to the medicare program and the desire to cut costs at the expense of patients. Three times per week has no medical evidence of superiority. It just is the standard for non medical reasons.
I am not looking to be contrary but I like some proof of any wide encompassing statement like you made. I am happy to listen to any argument or literature you have on it.

By the way, I do use your U. of Indiana protocol for buttonhole cannulation on my wife. I like it. it makes sense. Thank you for it.

[NDXUFan]

The major conclusion is that the body is made for Nocturnal dialysis, not short-treatment dialysis.  In addition, the body needs dialysis, at least 5-7 days per week.   Anyone in the dialysis industry who tells you differently, is not being intellectually honest.

Do you have research to prove this or is this just your own experience? I agree that more is better, but why does it have to be nocturnal? There are several ways to receive adaquate dialysis time and frequency.
Yes my wife needs dialysis 6 days per week as she feels rotten on the days off, but I cant expect that to be the same for everyone. Some do fine with a lot less. Some do better with longer treatment but fewer days than her.
When you say "major conclusion" , it would be good to give info on where the conclusion comes from.
I agree the industry tries to do the minimum to make profits. They are in it for profits and the medicare guidelines of 3 times per week are only there because of the cost to the medicare program and the desire to cut costs at the expense of patients. Three times per week has no medical evidence of superiority. It just is the standard for non medical reasons.
I am not looking to be contrary but I like some proof of any wide encompassing statement like you made. I am happy to listen to any argument or literature you have on it.

By the way, I do use your U. of Indiana protocol for buttonhole cannulation on my wife. I like it. it makes sense. Thank you for it.

NDXUFan: 
You are welcome, the IU infection rate for fistulas is non-existent.

Conventional haemodialysis   … here-after called ‘CHD’

 

CHD has traditionally been a day-time treatment

 

 CHD is often poorly tolerated and can cause many unpleasant symptoms

 

 CHD has poor outcomes for many patients

 

 CHD uses methods for improving the ‘adequacy’ of dialysis which focus on increasing treatment ‘aggressiveness’ rather than trying to make it more gentle

 

 Additionally…

 

CHD is usually given for 3 sessions/week, commonly for ~4 hrs/session and always as a daytime, ‘awake’ treatment

 

 CHD must try to remove all the waste and fluid retained by the body over the 2-3 days since the previous treatment, yet must do this in the short space of ~4-4.5 hrs (or, in the US, often significantly less? In the US, mean dialysis sessional time is ~210 minutes … this compares to ~270 minutes in Australia and commonly ~300 minutes in Japan.

 

 Rapid waste and fluid removal rate, as is implicit in CHD, can lead to many symptoms … cramp, nausea, vomiting, a falling blood pressure, fainting and after-treatment exhaustion.

 

 

 Can dialysis be made better?

 

 Dialysis can only be made more gentle and more tolerable by:

 

         1. Significantly increasing the length of each treatment time

 

         2. Increasing the number of treatments per week

 

         or … even better …

 

         3. By increasing both!

 

 This can only be possible, in a practical and acceptable way that maintains lifestyle, if dialysis can be performed during sleep. 

 
http://www.nocturnaldialysis.org/nocturnal_sbo1.htm

[MooseMom]

Obsidianom, if you haven't already, check into the site for which NDXUFan provided a link.  Dr. John Agar is an Australian nephrologist who has travelled the world spreading the word about NHHD.  He is a true patients' advocate.

[obsidianom]

I personally agreee with all you are saying about increased dialysis length and frequency. That is why I added another day to go to 6 days per week for my wife.
My point was we need REAL GOOD EVIDENCE and STUDIES to prove this. The only way to change the thinking of the dinosaurs out there and to have a chance to increase the insurance(Medicare in the US) coverage for more dialyisis is through good solid medical research . What we know instinctively or even through what we see ourselves isnt going to change anything without good evidence . Medicine practice is now all evidence based  and that is what we need .

Nocturnal dialysis is certainly a great method but personally I would be nervous myself with the current technology at night . I would have trouble sleeping with the machine running at night. I like to be able to see what is ocurring and moniter it. Also I worry about bleeding and lines in bed. But that is just me. Running daily dialysis 6 times per week for 2.75 hours per treatment gives my wife 16.5 hours total weekly. That is over 50% more than the 3.5 hours three times weekly she had in center. (10.5 hours)
So nocturnal is nice but daily short can work too. I would like to see studies of both and compare it with in center 3 times per week.
Bottom line is, MORE IS BETTER.

[Dman73]

The problem I have with nightly 6 days a week D is that I don't have a partner to watch me if something goes wrong (also  brings all that stress/equipment home which becomes a lifestyle) and I believe it would shorten the life of your fistula even with buttonhole cannulation.

Three days a week @ 4 hrs/350 flow & 16 ga needles works best for me and most unpleasant symptoms can be avoided by keeping your fluid gains under 3 kg. I only feel somewhat poorly at the end of a weekend.

Maintenance dialysis is a trade off and not designed to function like a normal kidney that's why they offer transplantation as an alternative.

                                         Best of luck All to whichever way you choose...

[MooseMom]

Obsidianom, there have been many studies comparing the efficacy of different modalities.  Here's just one:

http://blog.ecu.edu/sites/nephrologyondemand/?p=5756

Have a look at Bill Peckham's site, and you'll find more discussion there:

http://www.billpeckham.com/from_the_sharp_end_of_the/

Hemodoc's blog is here:

http://www.hemodoc.com/

Some other sites that may have information you want are:

http://www.thekidneydoctor.org/
http://renalfellow.blogspot.com/

Unfortunately, many papers that explore this subject are available to the general public only by subscription.  However, if there is a particular study you'll like to read, sometimes if you write directly to the author or the institution, they will give it to you for free.

Again, go to Dr. Agar's site whose like was provided above.  Have you looked there yet?

I will say that one barrier to the completion of such trials/studies is that they tend to be underpowered.

Have a look at some of the posts by IHD members who do NHHD.  I think you'd be astonished to see how much technology there is out there that's geared to keep the dialyzor safe.  The moisture detection monitors that are place under the arm are very advanced.  If you would have trouble sleeping with the machine running at night, well, that's just a question of your personal preference and doesn't have much to do with safety.  As another poster has said, just think about how nice it would be for your wife to have her entire day free since she has already dialyzed while she slept.  If would free up a lot of YOUR life, too!  Just some things to think about.

[MooseMom]

The problem I have with nightly 6 days a week D is that I don't have a partner to watch me if something goes wrong (also  brings all that stress/equipment home which becomes a lifestyle) and I believe it would shorten the life of your fistula even with buttonhole cannulation.

Three days a week @ 4 hrs/350 flow & 16 ga needles works best for me and most unpleasant symptoms can be avoided by keeping your fluid gains under 3 kg. I only feel somewhat poorly at the end of a weekend.

Maintenance dialysis is a trade off and not designed to function like a normal kidney that's why they offer transplantation as an alternative.

                                         Best of luck All to whichever way you choose...

Yes, you really have to decide what you can life with.  Dialysis has to fit into your life as you live it, otherwise dialysis becomes an intolerable burden.  The important thing is that patients are given information about all modalities and that they understand the pros and cons.  But it is often unclear what the pros and cons ARE until you live with dialysis.  I guess one should keep an open mind and be willing to make changes if the way you receive dialysis is not keeping you healthy while at the same time allowing you to live a semblance of a normal life.

[KatieV]

Have a look at some of the posts by IHD members who do NHHD.  I think you'd be astonished to see how much technology there is out there that's geared to keep the dialyzor safe.  The moisture detection monitors that are place under the arm are very advanced.  If you would have trouble sleeping with the machine running at night, well, that's just a question of your personal preference and doesn't have much to do with safety.  As another poster has said, just think about how nice it would be for your wife to have her entire day free since she has already dialyzed while she slept.  If would free up a lot of YOUR life, too!  Just some things to think about.

My center uses "immobilizers", which are double-sided adhesive that goes under the wings of the needle to firmly stick it to your skin.  Then multiple pieces of tape on top.  My arm would have an immobilizer, 4 pieces of 1/2" tape, and a moisture detector that was wrapped in a 2x2 held in place by 1" tape on each needle site.  Then that would be covered by a stretchy cotton sleeve.  I now use a catheter as I had fistula issues and the line connections are taped for extra security.

My cycler is connected through the internet to my center, who has people monitoring the readouts from 5pm to 8am (they are not available Sat night/Sun morning).  I sleep soundly most nights knowing they are watching.  They will call me if I don't respond quickly to an alarm and will call 911 if I don't respond to the their call. 

[Hemodoc]

I personally agreee with all you are saying about increased dialysis length and frequency. That is why I added another day to go to 6 days per week for my wife.
My point was we need REAL GOOD EVIDENCE and STUDIES to prove this. The only way to change the thinking of the dinosaurs out there and to have a chance to increase the insurance(Medicare in the US) coverage for more dialyisis is through good solid medical research . What we know instinctively or even through what we see ourselves isnt going to change anything without good evidence . Medicine practice is now all evidence based  and that is what we need .

Nocturnal dialysis is certainly a great method but personally I would be nervous myself with the current technology at night . I would have trouble sleeping with the machine running at night. I like to be able to see what is ocurring and moniter it. Also I worry about bleeding and lines in bed. But that is just me. Running daily dialysis 6 times per week for 2.75 hours per treatment gives my wife 16.5 hours total weekly. That is over 50% more than the 3.5 hours three times weekly she had in center. (10.5 hours)
So nocturnal is nice but daily short can work too. I would like to see studies of both and compare it with in center 3 times per week.
Bottom line is, MORE IS BETTER.

Actually, there are quite a few well done observational studies dating back to the beginning of dialysis since nocturnal thrice weekly was the early standard. There is only one RCT on nocturnal and it is a very flawed study do to several factors starting with lack of recruitment getting only about 1/3 of the patients needed to properly power the study. This was a negative study and failed to show any benefit. I have written several articles on why the FHN nocturnal study should be regarded as a failed study, not a negative study:

http://www.hemodoc.com/2011/11/is-the-fhn-nocturnal-study-negative-or-simply-null-and-void.html

http://www.hemodoc.com/2012/08/the-fhn-raises-its-ugly-head-one-more-time.html

http://www.hemodoc.com/2012/01/the-drum-beats-of-a-new-dialysis-randomized-trial-are-growing.html

http://www.hemodoc.com/2012/01/lead-fhn-authors-recommend-dialysis-practice-changes-based-on-retrospective-observational-studies.html

http://www.hemodoc.com/2011/11/the-fhn-nocturnal-study-is-flawed.html

http://www.hemodoc.com/2011/10/americas-dialysis-rcts-clinical-trials-or-economic-assessments.html

The history of randomized and controlled trials in dialysis care in the US is one of great disappointment and questionable outcomes. The granddaddy of them all is the NCDS that eliminated TIME as parameter of improved care. The HEMO study likewise dismissed increased solute clearances. Between the NCDS, the HEMO and now the FHN nocturnal, ALL of the modalities that we know from observational studies to improve mortality were "proven" wrong by these three studies. Thus, increased frequency, duration, TIME or duration of dialysis and increased solute clearances in the minds of academic nephrologists and the dialysis industry show no survival benefit. But that is NOT the end of the story once you dissect each of these three flawed RCTs.

http://www.hemodoc.com/2010/12/ncds-revisited-three-decades-later.html

Lastly, the best study on survival and nocturnal dialysis is another observational study by Pauly et al.

http://ndt.oxfordjournals.org/content/24/9/2915.short

So, in short, yes, we do have enough evidence today to state that nocturnal dialysis is best. However, not everyone can do nocturnal for various reasons but it is greatly underutilized in the US especially compared to New Zealand for instance.

[amanda100wilson]

Dman73 says ' Maintenance dialysis is a trade off and not designed to function like a normal kidney that's why they offer transplantation as an alternative.'  This implies that dialysis is a stopgap until transplant takes place.   Unfortunately for many, transplant is mot an option, and dialysis is the only option.  It is a lifestyle whatever modality you choose, because a healthy person does not have to factor either going to a dialysis clinic three times a week into their lives, or home dialysis, be it short daily or nocturnal/extended.  That being said, it does not mean that it has to define who you are, or what you do with the rest of yout time (although it can impact ability to get a job because of time comstraints).

You also talk about it being a trade off, and although I don't disagree with you, because everyone had to do whatever works best for them.  For me, getting
sub-optimal dialysis is simply not what I want.  As far as I am concerned,  the convenience of sitting in a chair for several hours and being a passive participant in your treatment (not saying that everyone in-unit is, but the majority are) and the higher mortality rate that this offers, is not a good trade off compared to taking control of my life, sitting in the comfort of my own home, having no recovery time, and a greater likelihood of living longer.

[Dman73]

re: Amanda100Wilson interpretation / Maintenance dialysis is a trade off and not designed to function like a normal kidney that's why they offer transplantation as an alternative.'  This implies that dialysis is a stopgap until transplant takes place.

I was referring to the the people that are running a 6 days a week D schedule and are trying to achieve as close to what a normal kidney can do. I believe that in the short term will make you feel better at the cost of wearing out your fistula out prematurely.

Transplant is the only mode that will achieve what a normal kidney will do but eventually it is only a matter of time before they are back on D. Many people choose not to get a transplant or do not qualify to get one and D is their only alternative. I had a transplant for 14 years and now have been on D for 12 years after it rejected.
I choose not to get another transplant mainly because of the costs of transplant drugs and the pain in the arse of staying active on the list for several years (stress tests every year if your over 40, ect.). The D medical team always uses "you have to do this or that if you want to stay on the list" as a club to get you to do something. I can ditch my cell phone and not be on call 24/7 and have the stress associated with it. I've been on hold for almost 4 years and not having to deal with all of that is great ( I can be bad if I want to and not be threatened by the list; in other words I broke their club).

My belief is that if you want to last a long time on D (40+ years) you have to preserve your access, watch your fluid intake (< 3 KG), phosphorus & potassium, get some daily exercise (swim, exercise bike, light weights & walk) and stay positive. Don't make D the center of your life but have a knowledge of how the process works and take some control over your treatment. If you are able to get a transplant it will give your body a break for a while even though experiencing a rejection is a rough & stressful event (I have read that many people die within 2 years after having a rejection and returning to D).   

Some people cannot have D in the comfort of their home but can still have control of their life and treatment and can run longer at slower speeds and achieve good clearances.

Find out what works best for you and plan on being here for the long term. 

[NDXUFan]

re: Amanda100Wilson interpretation / Maintenance dialysis is a trade off and not designed to function like a normal kidney that's why they offer transplantation as an alternative.'  This implies that dialysis is a stopgap until transplant takes place.

I was referring to the the people that are running a 6 days a week D schedule and are trying to achieve as close to what a normal kidney can do. I believe that in the short term will make you feel better at the cost of wearing out your fistula out prematurely.

Transplant is the only mode that will achieve what a normal kidney will do but eventually it is only a matter of time before they are back on D. Many people choose not to get a transplant or do not qualify to get one and D is their only alternative. I had a transplant for 14 years and now have been on D for 12 years after it rejected.
I choose not to get another transplant mainly because of the costs of transplant drugs and the pain in the arse of staying active on the list for several years (stress tests every year if your over 40, ect.). The D medical team always uses "you have to do this or that if you want to stay on the list" as a club to get you to do something. I can ditch my cell phone and not be on call 24/7 and have the stress associated with it. I've been on hold for almost 4 years and not having to deal with all of that is great ( I can be bad if I want to and not be threatened by the list; in other words I broke their club).

My belief is that if you want to last a long time on D (40+ years) you have to preserve your access, watch your fluid intake (< 3 KG), phosphorus & potassium, get some daily exercise (swim, exercise bike, light weights & walk) and stay positive. Don't make D the center of your life but have a knowledge of how the process works and take some control over your treatment. If you are able to get a transplant it will give your body a break for a while even though experiencing a rejection is a rough & stressful event (I have read that many people die within 2 years after having a rejection and returning to D).   

Some people cannot have D in the comfort of their home but can still have control of their life and treatment and can run longer at slower speeds and achieve good clearances.

Find out what works best for you and plan on being here for the long term.

 

Wearing out the fistula, the Indiana University Nephrologist(Over 30 years experience) said that has not been proven.  He takes care of about 100 patients at IU. 

[obsidianom]

With buttonholes the risk of fistula damage goes down.
I agree that the transplant people are often obnoxious in the way they control the lives of patients waiting for transplants. They have an attitude of being GOD as they dole out the life saving organs.
We ran into this when my wife and I went before them with her brothers kidney on the line as he offered. We were so upset and turned off by their attitude and DEMANDS on us we left and refused to go back . We sent them  a long letter documenting this . I will try to upload it here.
The first thing the idiot Nazi nurse said to us was "kidneys are a limited resource and we are the guardians of them". (this despite her brother offering his). Then they demanded a list of procedures and requirements that as a doctor , made me ill. It was a HORRIBLE experience . We decided to stay on dialysis and not put all the antibiotics and anti rejection meds in my wife. She doesnt tolerate many meds well.
I get so upset whenever I see transplant staff doing their thing in trying to control patients lives with the threst of not doing it if you dare not follow like sheep to the slaughter. My experience tainted me forever.

[obsidianom]

 
This is the letter we sent and got a phone call from the doctor we saw. But basically he was a jerk on the phone too.
The nurse who first saw us immediatly started the day with " I have a file on you two from the dialyisis clinic and I already know you(Dr. Steve) are too involved with your wifes care.
WEll, she said , "I wont stand for that and will tell you to be quiet (shush up) if I have to, and I have done it before to doctors. "  This was before I said a word other than hello.  Never mind that I had been caring for Paula for 32 years and take care of her dialysis and feeding tube every day.


                                                               
To The -------- Transplant Program,

We are writing in regards to our experience with the program during our visit on 1-9-13.  As a result of our overall experience and the negativity  we encountered , we will not at this time be moving forward with a kidney transplant.

As your program is the only one in this area serving--------we feel the need to explain our decision and the underlying dissatisfaction with our experience with your program.  When a program is in effect the only viable choice for a population , it is in a very powerful position .  We feel you are not utilizing this power in the most constructive manner.

Before our visit we were warned by numerous medical personnel in our area that you program has a reputation for negativity and being in effect very “heavy handed” with patients. We were informed of several patients locally who had transplants at facilities in Massachusetts due their poor experiences with your program people. Despite this we went in with an open mind and willing to judge for ourselves.

After our 2 plus hours at your facility and while driving home we both felt like we had been through an inquisition and were in some manner “wrongdoers” for having the audacity to desire a kidney transplant while having the “unique” problem of having medical issues. While as medical professionals ourselves we realize the complexity of Paula’s medical problems, we certainly did not arrive naively thinking a transplant would be as simple as replacing a car part.

From the first introduction by the nurse we were bombarded with 100% negativity.  One of the first lines from the nurse that summed up the whole experience was “kidneys are a limited resource and we are the guardians or  gate keepers” .   Excuse us, but who anointed all of you as GOD?  You may be in a unique position with your mission and guidelines, but your attitude all the visit was  of  superiority, control, a military like demand for orders being followed without question, authoritarianism as in a Dictatorship, and general treatment of us as if we were “lesser beings” to your Godlike power of life or death.

We cannot remember one positive comment made by anyone we met with.  All we heard were negative comments about Paulas medical problems and why they would cause complications and how terrible the experience would be. After hearing all those comments we felt like a major surgery without anesthesia would be more fun than a transplant.  We began to feel like Dorothy and her friends in “The Wizard of OZ”  approaching the Great and Powerful OZ  asking for help and being threatened.  The intimidation factor in your facility  approached being in front of the Wizard.

Between the 2 of us we have over 60 years experience in the medical field treating patients. Never in our wildest nightmares would we make patients feel the way we felt at your facility. You may be fine at transplanting kidneys , but your treatment of   sick and vulnerable  human beings had all the compassion of “The Wicked Witch” .  Somehow your people have forgotten there is a human being that becomes attached to the kidney you transplant.

We are proud of what we have survived over the past 7 years by working together and never forgetting what makes us human. We have survived rectal  cancer in Steve  ,  a failed fundoplication that  destroyed Paulas stomach forcing her to never eat again in her lifetime, and now kidney failure and dialysis that we do ourselves at home 5 days per week.  We deal with 2 medical   machines and all the medical aspects that  go with maintaining life . We do this without complaint or negativity. It takes several hours of our time daily. It has all changed our lives forever. We ask for little help to manage all this.     

  Yet knowing all this we heard not one supportive or positive statement from anyone at your facility.  Only comments on how a transplant would require “fastidious care” by us as a sort of warning.  Unbelievable!   Do you all think we just glide through our days utilizing these machines without a care in the world? That we cheat on taking medicines and shortcut the dialysis and feeding machines?  Your people noted how Paula hadn’t been hospitalized in almost a year despite all her medical issues. Yet didn’t connect the dots as to WHY. Perhaps if the negativity hadn’t clouded the room over like a fog the obvious answer would have appeared magically. We are careful and as “fastidious” as humanly possible and prove it every day. WE NEVER CUT CORNERS on Paulas care. Yet no one seemed to notice this while we were being lectured to on “the importance of being fastidious” .   Tone deaf would be a mild answer here to what we encountered.

To finish this we feel your program needs to seriously examine its treatment(non -medical)   of patients as people and its overall philosophy on dealing with perspective transplant patients.  We now believe that the poor reputation and negativity surrounding your dealings with perspective patients is very justified. When a life or death decision as to whether to have a transplant is made by the patient based on the horrible experience of the first visit , rather than the medical facts, something is very wrong. We simply would not feel comfortable putting Paulas life in the hands of the=== Transplant Program with the current attitudes and manner of dealing with human beings as perspective patients. This is not about your  medical care as we have no experience with that aspect .  This is about trust . We cannot trust medical people who treat patients in this manner.

Sincerely,

=

[Dman73]

re: NDXUFan: Wearing out the fistula, the Indiana University Nephrologist(Over 30 years experience) said that has not been proven.  He takes care of about 100 patients at IU.

Logically a fistula has a finite life and is lessened by the use of large needles (15 ga) and high flow rates over 350.
D facilities run low times at a high rate for productivity (profit) not for the benefit of the patient and that is why our survival rate is less than Europe & Asia.

The unit that I've had D in (Tampa Bay area) don't use buttonholes, they have tried them but found an increase of infections. I'm sure you can avoid this problem because you are the only one performing the technique and use proper sterile procedures. Quality can't be assured at a D unit because there ate too many people involved.

The only proof that I have is that all the long timers (> 40 years) run the 3 X week schedule (not more not less) and most run slower & longer with many at home.

[Dman73]

re treatment of people looking to receive transplants:

I believe that most of the bad treatment received from a procurement center is related to the great number of people looking for a kidney and the low number of kidneys available.

Back in the early 70's when transplation was in it's infancy the treatment that people looking for a kidney received was really good and that included those on D. It's was just too bad that the survival rates were poor.
 

[kit78]

If I did that at night I would most likely pull my needles out at night with all the tossing and turning I do...

[NDXUFan]

re: NDXUFan: Wearing out the fistula, the Indiana University Nephrologist(Over 30 years experience) said that has not been proven.  He takes care of about 100 patients at IU.

Logically a fistula has a finite life and is lessened by the use of large needles (15 ga) and high flow rates over 350.
D facilities run low times at a high rate for productivity (profit) not for the benefit of the patient and that is why our survival rate is less than Europe & Asia.

The unit that I've had D in (Tampa Bay area) don't use buttonholes, they have tried them but found an increase of infections. I'm sure you can avoid this problem because you are the only one performing the technique and use proper sterile procedures. Quality can't be assured at a D unit because there ate too many people involved.

The only proof that I have is that all the long timers (> 40 years) run the 3 X week schedule (not more not less) and most run slower & longer with many at home.

Yes, I would agree with a dialysis clinic, avoiding infections are almost impossible, too many different people and many do not use sterile methods.