Starting Nocturnal Dialysis

[stuman413]

Hi everyone,

I'm starting nocturnal in-center hemo the first of the year.  I have read many studies that show that nocturnal is much better than regular hemo, but after presenting this information to my neph she seems to think that the benefits aren't that different than regular hemo.  I decided to talk to the experts, you guys, and find out the truth.  I'd like to know if the benefits are truly worth the 6-8 hours on the machine three times a week.

Thanks

[Rerun]

The big thing that gets the best result is if you can sleep in that chair or whatever they provide you maybe a single cot.  If you can sleep through most of it you will feel so so much better than just 3 or 4 hours.  The blood pump is dialed down to 300 and so the pull of fluid is so much slower and you have so much less per hour to take off.  I don't feel so washed out.

I hope you like it.   

You also need to be able to trust your tech and nurse.  Day shift there are 4 or 5 running around but at night we get one tech and one nurse.  So, they can't be goofing off because no one is watching or sleeping on the job.  They are paid to stay awake. 

[amanda100wilson]

She needs to research the literature on it.  Longer , slower dialysis gives more time for movement of big molecules, such as phosphate, beta-2 micro globulin, potassium and just plain better dialysis.  Let your lab work once you start, show her

[noahvale]

^

[Desert Dancer]

Well, for starters I have no fluid restrictions and no dietary restrictions. (Obviously using a little common sense and restraint.)

I no longer have to take phosphorus binders since the longer hours allow the phosphorus to be removed. (That saves a good chunk of change.)

My labs are pitch perfect; kt/V is usually around 4.0 and my URR hovers around 98%.

My pump speed is set at 250... less than half what you see in a typical dialysis session. This means I'm not having fluid ripped off my body faster than it can be replaced, so no cramping, no vomiting, no crashing whatsoever. The longer hours also mean that if I *do* go overboard on the fluid, my UF rate is still ultra-low. My UF is never higher than 500 and is usually between 200 and 300.

The slow & gentle speed also protects my fistula.

And (if you do nocturnal at home, as I do) I get a good night's sleep in my own bed so the actual treatment does not devour my waking hours. When I wake up it's done and I can get on with my life instead of being chained to a chair for four hours.

Normal kidneys work 168 hours a week. Even a five-year old could tell you that the next best thing to that is 24 hours, not 12 hours. It's just basic math. Your neph is wrong and needs to consult with someone other than herself if she has no experience with nocturnal.

I'd never do it any other way. I feel so much better than I did in-center or on short daily, there's just no comparison.

[kitkatz]

It is incredible the difference i feel with nocturnal dialysis.  It took a week for the fog to clear my brain and about six months for the crazy funny part of my personality to return to normal.  I am stronger because of t.  My blood work is normal, do is my diet.

[lmunchkin]

If you can do nocturnal, do it.  It is the closest thing to a transplant. The more time spent on that machine, the better off you will be.  I agree to the doing it at home if possible, but if you can sleep in-center, then go for it. Keep us posted, ok?

Jesus Is Lord,
lmunchkin

[M3Riddler]

Hi everyone,

I'm starting nocturnal in-center hemo the first of the year.  I have read many studies that show that nocturnal is much better than regular hemo, but after presenting this information to my neph she seems to think that the benefits aren't that different than regular hemo.  I decided to talk to the experts, you guys, and find out the truth.  I'd like to know if the benefits are truly worth the 6-8 hours on the machine three times a week.

Thanks

Stuman,

If your nephrologist told you this... I would question her knowledge about dialysis... In center dialysis is only 3x or approx 9 to 12 hours per week.   Does this sound like enouph dialysis when your kidneys work 24/7 ?  In center dialysis is the lease adequate of any modality of dialysis.  Over time, you have a net buildup of phosphorus and other middle molecules such as beta2 microglobulin.. ( google can exlain this)   Long term phosphorus issues lead to vascular disease and calcification.   Not ot mention the high blood flows and extreme rate of fluid removal that can cause LVH - Left Ventricular Hypertrophy..  There is a high incidence of heart disease associeated with in center dialysis.

More frequent, slow dialysis is much better at removing the toxins that build up over time with regular in center hemo.  When you are in center, again, you are only getting approx 3-4 hours, 3x per week. You are only removing what is currently in the bloodstream as it takes time to move from the tissues to the cells to the bloodstream... Same goes for fluid and other toxins.   This is not enouph time for phosphorus and other molecules.  With in center, you will remove approx 700 -1000mg of phosphours. Most people eat more than this per day.  Add this to your day off and the weekend, you have a net gain.   
Most people pass away on a Monday or Tuesday when they are in center. This is because of the long weekend of not having dialysis. 

Nocturnal is the way to go.... slower, longer dialysis which will remove the most out of all modalities... Nocturnal is equivelent to a cadaver transplant...

Learn as much as you can.. Question Everything!!!

Again, if your nephrologist said this, I would ask her for documentation and articles/studies that relate to this.    If you wish, I can send you articles that support nocturnal being better... Just send me a message...

///M3Riddler

[AnnieB]

Too bad it's not a requirement for all nephrologists to spend a year as a kidney patient. I bet we'd get some very different advice....

[stuman413]

Well it's official, I start nocturnal on the 2nd of Jan, 2013.  The final treatment at my old clinic has yet to be determined.  Because of the holiday the regular schedule is switched up a bit and I'm supposed to go in on Sunday instead of Monday but my move is on Sunday so I'm going to have to make arrangements for something between today and next Wednesday.  I'm really excited to get on nocturnal after hearing so many positive things from everyone here.  The biggest problem I've had with dialysis over the years has always been phosphorus control.  A side effect of dialysis has always been that my heart rate goes up to the 120's at the end of treatment.  No doctor I've ever talked to has been able to explain why this happens.  It feels like my heart is going to leap outta my chest.  Anyway, thanks for the advice and I'll check back with everyone after I get settled into the new place.

[Simon Dog]

I suspect there are financial pressures that induce nephs to "conveniently" conclude that the cost savings treatments are as good as those that consume more resources.   Incentives can be subtle and insidious so that the doc is never asked to "choose between quality and cost", but given a framework which just happens to make it very easy to conclude that the cost saving treatment is indeed "as good" even if it isn't.

Trust but verify what your doc tells you.

[lmunchkin]

I suspect there are financial pressures that induce nephs to "conveniently" conclude that the cost savings treatments are as good as those that consume more resources.   Incentives can be subtle and insidious so that the doc is never asked to "choose between quality and cost", but given a framework which just happens to make it very easy to conclude that the cost saving treatment is indeed "as good" even if it isn't.

Trust but verify what your doc tells you.

Very well said, Simon.  There is motive behind the seen & the unseen most absolutely!

God Bless,
lmunchkin

[Simon Dog]

A sad truth is that the system can't support everything for everyone.     Sure, a doc can get any one patient a 4th weekly treatment by writing a justification letter, but someone who signs the check is going to want to have a little talk with any doc who tries doing this for all his patients (as in "nice practice you have here, it would be a shame if insurance/medicare stopped paying for it...").

The obvious conclusion is that the better treatments will go to the more assertive and informed patients, where is where ihatedialysis fits into a comprehensive treatment plan.

[ianch]

I'm not from the US so I really can't appreciate the system there, and perhaps I'm too logical as well

What I don't understand is that regardless of how or where one receives treatment someone is still paying for it. 

In my case it costs the government NZ$200 per hour ($160 US) for facility based sessions.  In Singapore it cost me NZ$125 per hour, and in the Philippines NZ$25 per hour.
   
However for HomeD it costs the government less than NZ$12 per hour.  So if a person qualifies medically and superlatively for HomeD then it should appear fairly obvious for the payer what should happen.

And this is before we even get to the part where HomeD can be better for the patient's health and well being.

Oh, if only logic ruled the world.

Perhaps someone can educate me as to why the US is reported to have one lowest percentage of HomeD patients in OECD? 

[stuman413]

I'm not from the US so I really can't appreciate the system there, and perhaps I'm too logical as well

What I don't understand is that regardless of how or where one receives treatment someone is still paying for it. 

In my case it costs the government NZ$200 per hour ($160 US) for facility based sessions.  In Singapore it cost me NZ$125 per hour, and in the Philippines NZ$25 per hour.
   
However for HomeD it costs the government less than NZ$12 per hour.  So if a person qualifies medically and superlatively for HomeD then it should appear fairly obvious for the payer what should happen.

And this is before we even get to the part where HomeD can be better for the patient's health and well being.

Oh, if only logic ruled the world.

Perhaps someone can educate me as to why the US is reported to have one lowest percentage of HomeD patients in OECD? 

I'm not positive, but I think the reason our country has not adopted this as a practice is for a few reasons.  The first is that the government is just now realizing the value of homeD as a healthy option for the current form of dialysis that is considered the "norm".   You have to remember that health care is very very expensive in this country due to simple greed.   In the 1970's, most dialysis clinics frequently ran patients for 8 hrs at a time.  Soon after however, they found out that a patient could survive on just 4 hr treatments.  The clinics, who for the most part were all "for profit" companies, saw that they could make more money by squeezing more patients in and for the next twenty years this type of dialysis was the only kind that most low income people could have access to because of the way publicly available medical care (medicare, medicaid) was setup.  Only people who were wealthy could afford to have the better dialysis. 

It has only been in the last few years that the government (in all it's slowness) has realized that patients can live longer and actually contribute to society more if they have a treatment that fits into their time schedule and can provide a much healthier alternative.  I'm hoping that with the induction of Obama-care things will start to change with regard to home treatments. 

[ianch]

Thanks for that Stuman413.  That kinda fits with what the guy who installed my machine told me.  He basically said, why would a private clinic send someone home when in doing so they loose money.

I guess I should consider myself lucky as the NZ health and accident compensation systems are state run (free).  I guess we are more socialist than I thought  lol

That said, in my area (North Shore) they only built the first satellite dialysis unit 18 months ago - spent 60million on it, for a 24 bed unit.  I understand they are already at capacity and not only extending it by 6 beds, but building another 24 bed satellite dialysis and HomeD training/support unit 10km up the road. 


     

[stuman413]

I love my country so much but sometimes I wish I was born somewhere else that had a better health care system. 

[MaryD]

I guess we are more socialist than I thought  lol
 

I don't feel that Australia or NZ are at all socialist.  It just makes sense to make good education and health care available for all.  I have lived in communist and socialist countries and they felt very different to what we have here.

[Simon Dog]

I'm new to HD.   What keeps me sane in the chair is "Home nocturnal is coming...." (my doc has agreed, just a few things need to be worked out first).

One problem with in-center home hemo is space.  I know of a center opening that will probably service around 100 patients - and has onlya few in center nocturnal slots available.  Having a therapy that is distinctly better is of limited benefit when only a few can get it.

[stuman413]

Well I have an update on my experience on in-center nocturnal dialysis.  I've been on it for two months.  The first month I was running 8 hrs per treatment.  After my labs all came back my doc lowered it to 6.  I feel like a new person, literally.  I have more energy, I've stopped taking one of my blood pressure meds and am only taking the other to control my heart rate during treatment, (so basically three times per week).  My skin is not so dry and ashy as it was, I can think more clearly and best of all I can function as a normal person.  My friends and family all tell me how much better I look (not so sickly) and I have even started a workout routine again. 

Things are really looking up for me at this point.

[lmunchkin]

That is wonderful to hear Stu!!!  The more dialysis, the better you feel!  It totally makes sense. Thanks for the update & so glad you found you what works for you!

God Bless,
lmunchkin

[WireMom]

I started dialysis at the beginning of the year.  Was on regular 3 days a week, 4 hour sessions.  A few weeks later, after hooking me up, one of the nurses asked if I was familiar with nocturnal.  Told her yes and that I'd talked to my neph about it over a year ago but he'd talked me out of it.  I told her what he'd said and she laughed like a drain!
    "You know WHY, don't you?" she asked.   

     Vacant look on my face, I replied, "No..."

    "Because he doesn't want to do rounds in the middle of the night."

OMG!  Red lights went off in my head like fireworks.  Not just his talking me out of nocturnal when he KNEW it would be better for me, but other things that had been bothering me about things he'd said.  So that day, she introduced me to the neph who doesn't mind doing rounds at night to keep his patients healthier and happier and after talking to him, my old neph was instantly history.

Everything the replies have said is true.  Less stress on your body, you'll feel better, be healthier, etc. etc,.   I love it and I never sleep at the clinic but I still get plenty of sleep.  It has made my life a LOT better even after such a short time.  And I have a 45 minute drive each way and I still love it!

              WireMom