Would like to hear opinions by those who have experienced both modalites as to which modality they felt better on and why?
not sure what you mean by “dialysis dialysis” but I’ll give it a shot to answer.
nocturnal is regular dialysis but is administered slowly for 6-8 hours while you sleep. when all goes well it is a good way to dialyze and it removes a lot of potassium and phosphorous so binders are not necessary if you dialyze 6X a week.
however, if you have a touchy access like I do you may get a lot of alarms during the night which does not help with sleeping.
I now use the NxStage which is simple to set up and the treatments are short, just over 2 hours, but the faster treatment means I must watch my diet and take phos. binders. I try to schedule a time when I can just sit and watch tv or read, make phone calls etc. knitting is not a good activity because it calls for 2 active hands.
I will be getting a recumbent bike soon and will try riding during dialysis, at least part of the time. I heard that people who do that do very well on dialysis so if it works out I will report back here.
Hi jane
My name is david i have been on both in centre dialysis and now nocturnal for 2 years now. In the begining the doctors and nurses tried to convince me that nocturnal was the best treatment for me ( calcium build up problems ) but all i could think of was staying on that machine for not 4 hours but 9. Once jumping that hurdle it’s all good from there. I’m married and 34years old working full time and 2 boys under 10 years old. my life before nocturnal was regimented and no fun at all. I now go on three nights a week from 9.30pm until 6.00am, then at work by 7.00am. We now have dinner together every night i get to help with homework and still have enough energy to go for a walk around the block most nights.
My wife does my needles for me. She’s a real trooper. The slower dialysis process doesn’t drain you as much, fluid restrictions are negated, food restrictrictions are still a little concern but life can carry on as nearly normal.
I’m new to this talking about my condition so i hopr i have helped. look forward to hearing how you are going and if you need to ask any more questions i’d really like to help. 
Thank you for your post, David. So glad to hear 3x week nocturnal has given you a sense of normalcy in your life with your family. I, too, am a family person and am endeavoring to find the correct home program for me. Things are still a little fuzzy though I have asked many questions in looking into all of this.
I am still not 100% clear on which choice is best- short daily dialysis, 3x week nocturnal or 5x week nocturnal. And I am still not clear on which machine is the best choice of the models available. Other concerns are eaze of operation of the machine, improved energy level and liberalness of diet. I’m looking for any and all opinions re distinctions between the different home txs.
Check out the types of home dialysis treatments and look at the "comparison chart: under “Types of Dialysis” from the home page of Home Dialysis Central. The chart compares all 6 types of dialysis: in-center hemodialysis, CAPD, CCPD, conventional home hemodialysis, daily home hemodialysis, and nocturnal home hemodialysis and includes many of the things you’re curious about.
So far as machines are concerned, clinics may only offer one type of machine. Some patients choose their clinic because it offers the treatment they want and the machine they want to use. I believe that the more patients ask for what they want, the more clinics will start to offer additional treatments and machines.
as to what form of dialysis is best, healthy kidneys filter blood 24/7. a treatment 3X a week cannot filter as much as a treatment 6X a week.
more dialysis is always better than less.
also, be aware that most of the filtering is done early in the treatment so 6 2 hour treatments will keep you cleaner than 3 4 hour treatments.
Hello, I am a NxStage patient and have been since July. Having been on in-center hemo for six years, being on NxStage at home has been terrific. My access is in my leg, so I have no restrictions on my activities as long as a I sit relatively still. My dialysis time is taken up with phone calls, computer use, television or movies, letter writing, reading, etc. I try for six days a week, but sometimes only do five. (Hey this is real life, sometimes you just have to do what you have to do!!) My blood work has been good. The treatment is much more gentle than in-unit three times a week dialysis, and I feel much better on this treatment. I am not nearly as tired. I have continued to work full time and raise three kids by myself through all of my dialysis “adventures” (including CAPD and a kidney transplant). Good luck to you. I am happy to say that the tide is turning and dialysis treatment is getting better and better. Keep an open mind and try to enjoy your life. Being on dialysis is only a part of it.
I was on regular 3 times per week hemodialysis at a dialysis centre for going on 3 years. I’m in my 3rd week of daily hemodialysis (5 days a week) while training to do it at home, and already, my health has improved in leaps and bounds. I have good colour, I have better appetite (not to mention that I taste food now - before, everything tasted like paste), I’m off BP meds totally and my phosphorus is so good that I only take one TUMS per day with supper, whereas 3 weeks ago, I was taking one with every meal. I no longer leave dialysis feeling half dead. Instead, I walk with a spring in my step. And that’s only short daily 5 times per week. Once I start nocturnal hemo at home, it should be even better. Another problem which has apparently disappeared is waking up at night with sleep apnea or restless legs. I honestly haven’t had a single episode for the past 2 weeks. So far so good. I would think any dialysis patient who has the motivation and the opportunity to try daily hemodialysis should at least do that. It’s almost a privilege to be able to do it.
Pierre
Pierre,
I am glad to hear how well you are doing on short daily dialysis. I have wanted to hear “first hand” reports on the differences between short daily dialysis and nocturnal dialysis. When do you start nocturnal? How much more liberal is your diet on daily txs as compared to 3x incenter? Because if you have a better appetite it doesn’t do any good “unless” you can eat more according to what daily txs remove. Will be interested in what you will have to report about nocturnal as to how much better you feel and are able to have an improved diet as compared to what you have now with short daily txs. Would like to know if it is really the “cadillac” as they say, or if short daily is sufficient for a life on dialysis.
hi jane
i was doing 3x weekly 4 hour in centre dialysis treatment.the diet and fluid restrictions were the hatrdest part of the treatment because i work in a manufacturing enviroment ( factory shed ) it’s hot. i tried to restrict my fluid intake to 750ml per day as directed by the nursing staff. the reason theyy gave was that my dialysis was 4 hours taking 1.5litres of fliud off in any one treatment meant that the risk off going flat ( the body’s abililty to re plenish fluids at the same rate they are being extracted ) was reduced. example 1.5 litres divided by 4 hours treatment was an ultrafiltration rate of .375 litres per hour. When you come off the machine with a UF like that you don’t feel washed out, tired etc. BUT 1.5 litres was just not enough equate that to 3 cups of coffe and 3 glasses of water in 48 hours NOTHING ELSE.
I now do 4x weekly 8.5 hrs Nocturnal dialysis at home and have done for 2 years now. I have no fliud restrictions because i dialyise longer. 1.5litres PER DAY x 2 days= 3 litres divide by 8.5 hrs treatment is a UF rate of .353 very acceptable. you can even have as much as 2 litres a day with A UF of .47 anything over about a .66 UF you feel washy but that is about 5 litres in two days.
The dietry restrications are all but gone Salt is still a no no but apart from that i eat as i please. dialysis machine aren’t real good at distinguishing some good components so it extracts proteins and good fats. you need to eat more red meats to replace these.
My experience with nocturnal has been all positive so i would reccommend it for all patients who have the option.
Once again my experience is only that MY EXPERIENCE, others may feel different.
Hope this helped i wish you all the best.
cheers
David
Absolutely! As much detail as you can provide would be greatly appreciated!
Jane,
So far, finishing up week 4 of short daily plus home hemo training, and this is what I can tell you about how my weekday diet has changed. First of all, as I said, my phosphorus is now in the normal range for the first time in 3 years. So, I don’t have to chew more than one TUMS per day, and even that may change soon. I’ve haven’t gone to the almost totally liberal diet of nocturnal hemo yet, but I eat cheese every day, and I’m gradually going back to the more vegetarian diet I always had before the kidney failure. Why? Well, because I can eat more phosphorus along with my protein, so, that means I can eat more legumes, more tofu, etc. I can also eat the equivalent of 2 days worth of potassium in just one day, since I dialyze every day except on weekends. Fluid-wise, there isn’t a big change, because I still can’t really drink more than a day’s worth between treatments, the reason being that you don’t want to have to remove that much more fluid in just a 2 hour treatment. With nocturnal, what I understand from other patients who have been on it locally is that they pretty much drink whatever they want whenever they want, since how much needs to be removed is not going to be much of an issue when you’re on dialysis more than 6 hours a day. They don’t like the UF rate to be much more than 1000 when you dialyze at home, at least the folks at my home dialysis unit. So, with short daily, you still have that fluid restriction.
So, to summarize, so far with short daily, same fluid restriction more or less (although in practice, I find I can drink more without going too much over my dry weight), but quite a bit more liberal for phosphorus and potassium (which broadens the meal choices a lot).
To answer your question, once I finish my training in 2 weeks, I will likely start my first home hemodialysis session at home on April 11. The first one will be with my nurse present. After that, there will be a week or two of short daily before sleeping 3 nights at the hospital for the switchover to daily nocturnal hemo. This is how the program works here. Nocturnal still isn’t a sure thing until then, because they still need to be sure I wake up to the alarms when they sound, and in a state where I’m able to take action. But the advantages of short daily hemo are already so good that I wouldn’t be to displeased about continuing with that.
I hope I still pass in 2 weeks though 
Yesterday was my first time taking myself off without supervison, and when I was taking off the arterial bloodline to connect it to the saline line for rinseback, I forgot to close the clamp on the arterial needle line before disconnecting it. Duh! Luckily, I caught my mistake right away, but, boy, you should see how fast the blood comes out of an unclamped needle line! Today, I feel like such a dunce
Luckily, because it’s Good Friday, I get a break today. I get my dialysis done at the regular dialysis unit for today and Easter Monday (since I’m still on training and the home dialysis unit is closed). On the other hand, I’m on buttonholes now, and it will be the first time I have to put them in myself outside of the home dialysis unit. I’m a little nervous about that since I’ve only done it myself with buttonhole needles a couple of times. Maybe I’ll just let the nurse needle me the regular way but in a different spot
Pierre
Yesterday was my first time taking myself off without supervison, and when I was taking off the arterial bloodline to connect it to the saline line for rinseback, I forgot to close the clamp on the arterial needle line before disconnecting it. Duh! Luckily, I caught my mistake right away, but, boy, you should see how fast the blood comes out of an unclamped needle line! Today, I feel like such a dunce
I think we have all done that at least once lol!! It looks like a lot of blood, but at least in my case it was less than we draw in one tube of blood (I quickly reattached then clamped then unattached again.
I’m a little nervous about that since I’ve only done it myself with buttonhole needles a couple of times. Maybe I’ll just let the nurse needle me the regular way but in a different spot
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Don’t chicken out, give it a try and remember if you have trouble with the buttonhole needle just change to a sharp. You can do it!!
Hey Cathy
Thanks for that. I greatly appreciate your encouragement.
You can bet I’ll make sure that clamp is closed the next time! I guess it’s a good way of learning
Pierre
Hi Cathy,
I just thought I would let you know that my self-needling at the regular dialysis centre this evening went very well. I had a bit of a problem when the arterial needle wouldn’t flash back any blood, but a very slight repositioning cured it immediately. I ended up not having a single arterial or veinous pressure alarm the whole treatment. The dialysis nurses and aides seemed pretty impressed as I put the needles in, and then as I took them out myself and taped myself at the end. Thanks again for your encouragement.
Pierre
You are so welcome, and congratulations!! Bet you have a lot more confidence now.
I remember early on when I would have intermittent problems with the buttonhole (still do) and I wrote in here and got so much help. Now I don’t sweat it, if it gives me trouble (usually the arterial) then I just use a sharp, sometimes I go weeks without any difficulty and then sometimes I need to use a sharp two days in a row. I just remind myself that many people use the sharps on buttonholes everyday so don’t freak out!!
Just another week to being home, it is so nice doing dialysis at home, although I will admit that for the first month or so I was definitely depressed about the whole thing, but I was also new to dialysis so it was a huge adjustment period. Sure, sometimes I don’t feel like getting started at night, but once I get going it is fine.
Hi Cathy & all,
I noticed that you said that you were depressed when you first started home dialysis. As I’m sure all of you know, depression is a very common reaction to kidney failure and the demands of treatment, along with the fears of how kidney disease and treatment will affect your life. However, help is as close as your nephrology social worker.
I am a nephrology social worker by background and worked with dialysis and transplant patients for years. I hope that those of you who are in training or doing home dialysis realize that you have as much right to having access to the clinic social worker as patients who do in-center dialysis. Your social worker can (and should) help you with more than travel, transportation, and insurance (what I’ve lately heard referred to as TT&I). Social workers working in dialysis clinics and transplant programs have masters degrees in social work. This means they could be doing counseling in mental health centers and some (like me) have licenses that would allow them to do private practice counseling if they hadn’t chosen to work in medical social work.
Most social workers would prefer to help patients cope with kidney disease and treatment stresses than deal with the TT&I tasks that clinics assign to them. TT&I tasks could easily be done by a clerk with less education at a lower cost. If clinics had clerks do these tasks, their social worker(s) could spend their time counseling patients to overcome depression faster. Today, this is not happening as much as patients deserve.
I’ll get off my soapbox now.
I agree completely with Beth; I can’t help mentioning that the Northwest Kidney Centers does have a person assigned to coordinate patients travel, another person to organize patient transportation and a whole finance department to work out patient billing issues. This leaves our wonderful, highly trained Social Workers time to focus on mental health, coping and social issues.
Bill
Cathy,
Believe it or not, the occasional problem you describe about having to use a sharp is exactly what happened to me today. The arterial buttonhole just wouldn’t go in. My nurse explained that sometimes, scar tissue forms, and when that happens, you just have to use a sharp that day, or maybe even a few days to reform the buttonhole tunnel.
Speaking of depression, I was getting pretty confident about my ability to do home hemo in a week and a half until they made me read the part about air embolisms today :?
Beth,
Where I go, they have a separate social worker for the home dialysis patients.
Pierre
Pierre,
I’m always glad to hear of clinics that staff appropriately for social workers. Is your home clinic in a hospital or are you being trained in a satellite clinic?
In my opinion, home dialysis patients need at least as much support as in-center patients because they aren’t seen as often. I think it’s important to give those of you who do home dialysis the support you need to want to continue to do home dialysis and to live full, active lives.