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Anonymous
November 9, 2004, 07:27 PM
Does anyone know if there is more vitamin/mineral loss with longer forms of dialysis?

Gus
November 9, 2004, 08:17 PM
Does anyone know if there is more vitamin/mineral loss with longer forms of dialysis?


It has been said that longer slower dialysis is better and cleans the blood better.........which in most cases takes more of the Phosphorous out of the blood.....something that is harder at 3x a week. The only thing that comes out qucker is fluid........if adjusted and balanced correctly electrolyte imbalance shouldn't be a problem.

Now removing too much within a short time is a nono......harmful and even fatal sometimes.

Anonymous
November 9, 2004, 08:19 PM
I've been told that water soluable vitamins are lost through dialysis. So I am to take vitamin C and Bcomplex when I get off dialysis. Other minerals such as phosphorus and calcium are also taken out through dialysis. I am having trouble with my phosphorus being too low and calcium too high so I have stopped my calcitriol and eat all the high phosphorus foods I can. If it still stays too low I will be getting phosporus added in my dialysate.

In general with longer and/or daily dialysis there is more loss which is generally good so dietary limitations are greatly reduced or even eliminated as in my case. I basically have no dietary restrictions at all.

Gus
November 10, 2004, 10:42 AM
I've been told that water soluable vitamins are lost through dialysis. So I am to take vitamin C and Bcomplex when I get off dialysis. Other minerals such as phosphorus and calcium are also taken out through dialysis. I am having trouble with my phosphorus being too low and calcium too high so I have stopped my calcitriol and eat all the high phosphorus foods I can. If it still stays too low I will be getting phosporus added in my dialysate.

In general with longer and/or daily dialysis there is more loss which is generally good so dietary limitations are greatly reduced or even eliminated as in my case. I basically have no dietary restrictions at all.

Cathy, do you take specially formulated vitamins for dialysis patients like NephroVite/Dialyvite or do you take regular off the counter vitamins?.......also, a tip for all of you on dialysis.......get affordable vitamins for dialysis patients at......... http://www.nephrotech.com ......look for RenaPlex/100 tabs for $8.00

Anonymous
November 10, 2004, 12:06 PM
Cathy, do you take specially formulated vitamins for dialysis patients like NephroVite/Dialyvite or do you take regular off the counter vitamins?.......also, a tip for all of you on dialysis.......get affordable vitamins for dialysis patients at......... http://www.nephrotech.com ......look for RenaPlex/100 tabs for $8.00 [/b]

Right now I am taking Neprovite, but I don't see why you couldn't take over the counter in the same doses. I already take so many pills, mostly vitamins (3 iron, 4 stool softeners, B6, B12 and folic acid, nephrovite, C, Q-gel coq 10, lovastatin (since dialysis made my cholesterol soar) and amitriptyline (which they are trying for my restless legs), that I like being able to take it in one pill. In case you are wondering why I also take C and B's, the C is taken with the iron to help absorption and the Bs are taken to keep my homocystine in a normal range.

Gus
November 10, 2004, 04:54 PM
Right now I am taking Neprovite, but I don't see why you couldn't take over the counter in the same doses.

I also take over the counter vitamins but in most cases only vitamin C chewable......for fighting colds better.......I try to avoid all others and stick with the specially brands for dialysis patients..

I already take so many pills, mostly vitamins (3 iron, 4 stool softeners, B6, B12 and folic acid, nephrovite, C, Q-gel coq 10, lovastatin (since dialysis made my cholesterol soar) and amitriptyline (which they are trying for my restless legs), that I like being able to take it in one pill. In case you are wondering why I also take C and B's, the C is taken with the iron to help absorption and the Bs are taken to keep my homocystine in a normal range.


My goodness, you beat me on the amount of vitamins you take!... :roll:

Beth Witten MSW ACSW
November 16, 2004, 04:32 PM
Always talk with your kidney doctor about any vitamins or minerals before you take them. Doses that would normally be OK for people with working kidneys may be too high or too low if you have kidney failure and are on dialysis.

The nutrition module of Kidney School (www.kidneyschool.org) has a chart of vitamins, what they do and how much you need. Although water soluble vitamins are washed out with dialysis, fat soluble vitamins (A, D, E, and K) can build to toxic levels in people on dialysis.

Gus
December 9, 2004, 09:33 PM
Anybody know where to get a better price for Nepro? Or any other alternatives for supplement drinks?

http://store.devinemedical.us/ros50632.html

Beth Witten MSW ACSW
December 10, 2004, 12:40 AM
You can order Nepro from Ross, the manufacturer, directly. Go to www.rosstore.com and enter in the search field "nepro." You will find 24 cans for $70 (price includes standard shipping). They sell it in 3 flavors -- cherry, butter pecan, and vanilla.

In addition to liquid supplements, like Nepro, there are bars and even cookies. Some dietitians recommend that patients buy powdered egg whites and add them to other food they're eating to give them a higher protein diet at a very low cost. Some supplements may be available at relatively low cost from your local grocery store or discount store (Costco, Wal-Mart, etc.).

Before you drink or eat any nutrition supplement, ask your dietitian whether it is safe for people on dialysis. If your dietitian doesn't know about that specific supplement, he/she can find out out for you. One thing that might help everyone at your clinic is to have a "tasting day" at the clinic with samples of supplements. This would let you and other patients see which ones you like before you buy 24 cans of a supplement you hate.

Gus
December 10, 2004, 12:59 AM
You can order Nepro from Ross, the manufacturer, directly. Go to www.rosstore.com and enter in the search field "nepro." You will find 24 cans for $70 (price includes standard shipping). They sell it in 3 flavors -- cherry, butter pecan, and vanilla.


Yes, I saw their page.....those 24 cans are quite expensive..... :(

In addition to liquid supplements, like Nepro, there are bars and even cookies. Some dietitians recommend that patients buy powdered egg whites and add them to other food they're eating to give them a higher protein diet at a very low cost. Some supplements may be available at relatively low cost from your local grocery store or discount store (Costco, Wal-Mart, etc.).


Powdered eggs, interesting.....will look for that. Currently, am trying off the counter Ensure and Boost Plus but hate their Pottasium value.....it's too much potassium!........anyway, I just take small ammounts daily.....but really am looking for the beverage type supplements and if possible the powdered ones are okay......I have tried Nepro in the past......tastes okay, not too bad, but the price range has kept me away from it pretty much....the cheapest I found was at www.hocks.com at $61.00 for 24.....


Before you drink or eat any nutrition supplement, ask your dietitian whether it is safe for people on dialysis.

Just recently I was told my phosporous and Albumin is dropping, am eating what my tummy asks for and don't wanna over do it....just don't wanna eat extra when my appetite doesn't call for it........am doing my research whether decreasing from 2.5 hours to 2 will help....or maybe dialyzing every 2 days without having 2 days off.......just some thoughts...


If your dietitian doesn't know about that specific supplement, he/she can find out out for you. One thing that might help everyone at your clinic is to have a "tasting day" at the clinic with samples of supplements. This would let you and other patients see which ones you like before you buy 24 cans of a supplement you hate.

Nice idea, "Tasty Day" I like that....... :)

Anonymous
December 10, 2004, 11:44 AM
Gus am I confused?? I thought you did 6x a week dialysis, what do you mean by dialyzing every 2 days and having 2 days off?? I've found that my phosphorus got very low on daily, I now get to drink my beloved diet coke to my heart's content, and I was instructed to up my potassium intake significantly and it always still tests in the low 4s, so with daily I'm not sure you have to worry too much about potassium.

I do, however, do 5 hours a day at a bfr of 300 so am probably getting more dialysis than you are at 2 hours a day, that might make a difference. What are you finding your pre and post numbers to be?

Cathy

Gus
December 10, 2004, 01:01 PM
Gus am I confused?? I thought you did 6x a week dialysis, what do you mean by dialyzing every 2 days and having 2 days off??

Right now I do 6x a week doing 2.5 hours........however, my labs show that my Albumin and Phosporous is dropping considerably and am beginning to feel awful......and also coming to a point where I can't tolerate 2.5 anymore..........basicly I need some adjustments......some of the options am thinking of are........

- Go from 2.5 to 2 and reduce BFR from 410 to 375
- Dialyze 5x a week without having 2 days off.....example: M-F....Sat:Off....then Sun-Thur...Friday:Off....Sat-Wed....etc
- Dialyze every other day.....in other words every 2 days....

But first am gonna try the supplements......

I've found that my phosphorus got very low on daily, I now get to drink my beloved diet coke to my heart's content, and I was instructed to up my potassium intake significantly and it always still tests in the low 4s, so with daily I'm not sure you have to worry too much about potassium.


Seems I am ending up just like you! Prolly I need to stop taking Renegel.......but really, I need adjustments....

I do, however, do 5 hours a day at a bfr of 300 so am probably getting more dialysis than you are at 2 hours a day, that might make a difference. What are you finding your pre and post numbers to be?


That's alot of hours......are you a big person? I only average 125lbs.......and I only use 15liters of dialysate, am currently running BFR at 410.......labs are good and it looks like it's sliding downhill rather quick.....I've also noticed that dialyzing close between 2 times don't mix......for example, having dialysis in the evening and then dialyzing next morning does not work well, should be at least 24 hours apart.....I'd wanna try 48 hours apart.... :)

Cathy

Anonymous
December 10, 2004, 01:34 PM
however, my labs show that my Albumin and Phosporous is dropping considerably and am beginning to feel awful......and also coming to a point where I can't tolerate 2.5 anymore..........basicly I need some adjustments......some of the options am thinking of are........

Are you taking off too much fluid?? How is your conductivity?? I've found the only times I don't feel good are when I take off too much or when my conductivity is below 13.9 or so. Also to up your albumin you need to eat more protein, try protein bars, look for ones high in protein. How is your potassium, if low it not only is dangerous but makes you feel weak. I've found eating nuts is good for protein, potassium and phosphorus.



Seems I am ending up just like you! Prolly I need to stop taking Renegel.......but really, I need adjustments....

My goodness, I was off ALL binders as soon as my phosphorus went low, so even with upping my phosphorus and eating lots of high phos foods I still have a normal level. So YES (with your units permission) stop all binders!!



That's alot of hours......are you a big person?

Yes I am, but I don't think that is the reason, I was supposed to be on 7-8 hours on nocturnal so they are trying to make the 5 hours equivalent to the 7-8 hours.


labs are good and it looks like it's sliding downhill rather quick.

What do you mean by that, I haven't seen my blood work really change at all since the beginning when I first started. My pre dialysis creatinine is usually around 6, BUN around 40 and post at low 2's and teens for BUN.

Gus
December 10, 2004, 01:55 PM
Are you taking off too much fluid?? How is your conductivity?? I've found the only times I don't feel good are when I take off too much or when my conductivity is below 13.9 or so. Also to up your albumin you need to eat more protein, try protein bars, look for ones high in protein. How is your potassium, if low it not only is dangerous but makes you feel weak. I've found eating nuts is good for protein, potassium and phosphorus.


Am not taking too much fluid at all, am averaging .5 to remove daily...sometimes I do only 1.2......

Conductivity? With NxStage there's no such thing as conductivity measurement......

Protein and Phosporous is what I'm working at the moment......pottassium is okay....4-5

Ah nuts, gonna get me some Planters Mixed nuts..... :)


My goodness, I was off ALL binders as soon as my phosphorus went low, so even with upping my phosphorus and eating lots of high phos foods I still have a normal level. So YES (with your units permission) stop all binders!!


No kidding!......I was suggested to keep taking Renegel....LOL!! now am off to preparing my coffin!!......certainly I should stop Renegel!! :shock:



Yes I am, but I don't think that is the reason, I was supposed to be on 7-8 hours on nocturnal so they are trying to make the 5 hours equivalent to the 7-8 hours.


Your doing a different machine at home and not NxStage.........btw, what dialyzer are you using?



What do you mean by that, I haven't seen my blood work really change at all since the beginning when I first started.

I mean by calcium, phosporous, and so on.........from the very first day I started till now BIG changes occured.......my blood pressure before doing daily was 190/100 and now it averages 125/89 .........

My pre dialysis creatinine is usually around 6, BUN around 40 and post at low 2's and teens for BUN.

Mine are about the same as yours..........

Bill Peckham
December 10, 2004, 02:24 PM
Gus there is conductivity I think with the NxStage the difference I think is it is determined by the dialysate fluid that you receive pre-mixed. Gus do you know if the fluid you get comes in different "flavors"? I mean different calcium or potassium concentrations? If your potassium is getting low one solution on a regular dialysis machine would be to raise the concentration of potassium in the bath. If your issues are conductivity that would relate to the sodium concentration in your bath; it might need to be adjusted.

I don’t totally understand how the NxStage works but I think it actually does hemofiltration as opposed to hemodialysis. I’d like to understand the difference more clearly but my understanding is hemofiltration removes waste from the blood via convection while regular machines use mostly diffusion to move wastes across their dialyzer membrane. So I imagine the NxStage must infuse the ultra pure dialysate at some point and then draw it off later in the process? Does anyone know how the NxStage works? Is it hemofiltration or hemodialysis?

Gus
December 10, 2004, 02:46 PM
Gus there is conductivity I think with the NxStage the difference I think is it is determined by the dialysate fluid that you receive pre-mixed. Gus do you know if the fluid you get comes in different "flavors"?

Currently, the dialysate fluid I get and I was told it comes only in one flavor.......it's premixed with 1K of pottassium.....everybody gets the same.....I assume it's more economical for them to do that and just make adjustments on patient side of things

I mean different calcium or potassium concentrations? If your potassium is getting low one solution on a regular dialysis machine would be to raise the concentration of potassium in the bath. If your issues are conductivity that would relate to the sodium concentration in your bath; it might need to be adjusted.


Hmm, not sure how to adjust those things with NxStage.....perhaps am out of luck there......dialysate is all premixed and perhaps all the adjustments need to be on patient side......


I don’t totally understand how the NxStage works but I think it actually does hemofiltration as opposed to hemodialysis. I’d like to understand the difference more clearly but my understanding is hemofiltration removes waste from the blood via convection while regular machines use mostly diffusion to move wastes across their dialyzer membrane. So I imagine the NxStage must infuse the ultra pure dialysate at some point and then draw it off later in the process? Does anyone know how the NxStage works? Is it hemofiltration or hemodialysis?


Well, I can tell you that it does both.......ultrafiltration for the removal of fluids......has its own volumetric control for water removal and it has hemodialysis where particle waste pass from membrane blood circuit to outer dialysate compartment where then it leads to drain line.......the machine automatically calculates remaining time but the patient has the option to change parameters on the fly.

Bill Peckham
December 10, 2004, 03:12 PM
Well, I can tell you that it does both.......ultrafiltration for the removal of fluids......has its own volumetric control for water removal and it has hemodialysis where particle waste pass from membrane blood circuit to outer dialysate compartment where then it leads to drain line.......the machine automatically calculates remaining time but the patient has the option to change parameters on the fly.


So if you're using 12 litters per treatment and the treatment is two hours long that must mean your dialysate flow rate is 100 ml/minute. Do I have that right? I don't understand what the machine bases the treatment length calculation on, what info does the machine use to determin how long the run lasts?

With the NxStage are the mechanics the same as a regular macine? In other words there is the blood path going from the access through tubing/pumps/air chambers/air detectors to the dialyzer then back to the access. And there is a one way dialysate path that goes to the dialyzer and then to the drain. And the machine does not infuse dialysate into the blood path way as a matter of course. DOes that sound about right?

And if you are feeling like you have low blood pressure during treatment does the machine infuse the untrapure dialysate through the dialyzer?

Thanks for being our NxStage resource Gus.

Anonymous
December 10, 2004, 03:30 PM
Your doing a different machine at home and not NxStage.........btw, what dialyzer are you using?

I am on the Fresenius 2008K using an F70 kidney.

Please don't stop your binders without talking to your nurse, but we are with the same company, just different centers, and stopping binders was the first step, then the repeated the phosphorus in a week or so and when it was still low told me to up my phosphorus intake even more. It was in the normal level the next month and I will be doing my third month's tests in another week and a half.

Gus
December 10, 2004, 03:38 PM
Your doing a different machine at home and not NxStage.........btw, what dialyzer are you using?

I am on the Fresenius 2008K using an F70 kidney.

It's high flux then.........perhaps mid-flux?

Please don't stop your binders without talking to your nurse, but we are with the same company, just different centers, and stopping binders was the first step, then the repeated the phosphorus in a week or so and when it was still low told me to up my phosphorus intake even more. It was in the normal level the next month and I will be doing my third month's tests in another week and a half.

Indeed, your invited to my funeral next week.......bring binders instead of flowers........ jokingly...:roll:

Gus
December 10, 2004, 04:18 PM
So if you're using 12 litters per treatment and the treatment is two hours long that must mean your dialysate flow rate is 100 ml/minute. Do I have that right? I don't understand what the machine bases the treatment length calculation on, what info does the machine use to determin how long the run lasts?

Prolly a very BIG guy would use 12 liters.....that's 12 large bags!!! .....I only use 15liters at about 60-64mL........calculation is done based on how much fluid you gained.......but the patient can adjust/change parameters.......if I'd want to run longer I'd decrease the filtration factor...now if I'd wanna come off earlier I'd increase the filtration factor.......
:shock:

With the NxStage are the mechanics the same as a regular macine? In other words there is the blood path going from the access through tubing/pumps/air chambers/air detectors to the dialyzer then back to the access. And there is a one way dialysate path that goes to the dialyzer and then to the drain. And the machine does not infuse dialysate into the blood path way as a matter of course. DOes that sound about right?

It's just like a regular machine but without all the high tech features like custom profiling.........all blood lines and paths as conventional dialy sis BUT compact and small for ease of mobility.......has it's own high-flux equivalent to F80(that's what I was told) .........and of course dialysate goes through dialyzer and then to drain...........the cartridge holds all the lines and dialyzer which is only used once......then disposed........only one saline bag is used for setup and treatment termination......if saline was used during treatment then you'll need to use another bag for ending therapy........300 or more is needed to end treatment.

And if you are feeling like you have low blood pressure during treatment does the machine infuse the untrapure dialysate through the dialyzer?

No, it does not have sodium profiling or where you can give yourself sodium.........the dialysate has the normal amount of sodium an average person maintains so it's maintained throughout treatment, now if you need more then you'd use the saline shot.......

Thanks for being our NxStage resource Gus.

Bill Peckham
December 10, 2004, 04:40 PM
Prolly a very BIG guy would use 12 liters.....that's 12 large bags!!! .....I only use 15liters at about 60-64mL

Hmmm...I've gotten confused. How many liters are in a bag? If you're using a dialysate flow of 60 ml/minute then you need 7.2 liters for a two hour run right? I guess I've never heard of dialysate flows that are that low. I guess I don't understand the impact of such a low dialysate flow rate. I've always thought that dialysate flow should be greater than blood flow.

Gus
December 10, 2004, 05:20 PM
Hmmm...I've gotten confused. How many liters are in a bag?

Each bag has 5liters.........in my case I use 3 bags which equal 15liters.......

If you're using a dialysate flow of 60 ml/minute then you need 7.2 liters for a two hour run right? I guess I've never heard of dialysate flows that are that low. I guess I don't understand the impact of such a low dialysate flow rate. I've always thought that dialysate flow should be greater than blood flow.

Ummm, actually all the dialysate fluid is used......when all fluid removal is cleared it can be sped up to come off earlier........actually I've felt uneasy with fast dialysate flow rates....am not no scientist but NxStage has it's own nifty little features.......will be making more research on this little machine.......

Bill Peckham
January 3, 2005, 06:50 PM
Gus - how about an update? How are you feeling these days? What treatment schedule (length/frequency) did you settle on?

Gus
January 3, 2005, 08:07 PM
Gus - how about an update? How are you feeling these days? What treatment schedule (length/frequency) did you settle on?


Hi Bill, good to see you again!.....It's a brand new year and am really excited.....can't wait to see 2006!.....hehe

Anyhow, am feeling great and hypersensitive reactions seem to have disapeared...........

There were a few changes I did which include not taking ACE inhibitors, heparinless treatments, and flushing the lines and dialyzer with 600 saline fluid............

Somehow, the long term dialysis I've had caused my body to develop some antibodies which in turn causes hypersensitive reactions to some material particles so flushing the lines/dialyzer helped alot..........the Heparin and ACE inhibitors contributed in increasing the degree of the reactions so stopping those was a feasible step in preventing any further problems..............

Still am armed with Benadryl liquid 12mb.....in case any reactions happen again.......since 23rd December I have not taken any Benadryl so it seems we've nailed this time......... :P

I also take Nepro for supplements.........now and then I also take Whey protein powder......in addition to Dialyvite tabs.......

So far so good and am really happy..............


I hope your doing well and c'mon now you have to try NxStage.........

Anonymous
January 4, 2005, 11:49 AM
Hey Gus,
Can you say more about this flushing technique you are using minus heparin? How often do you flush and with how much saline? Do you add to your goal for saline used from the beginning of tx? Who gave you this idea? I would be interested to know if it improves your clearance and if you feel better from eliminating heparin.

Anonymous
January 4, 2005, 12:00 PM
Gus wrote:
No, it does not have sodium profiling or where you can give yourself sodium.........the dialysate has the normal amount of sodium an average person maintains so it's maintained throughout treatment, now if you need more then you'd use the saline shot.......

Please explain this statement. What do you mean by "saline shot"?

Anonymous
January 4, 2005, 12:01 PM
Gus wrote:
No, it does not have sodium profiling or where you can give yourself sodium.........the dialysate has the normal amount of sodium an average person maintains so it's maintained throughout treatment, now if you need more then you'd use the saline shot.......

Please explain this statement. What do you mean by "saline shot"?

Gus
January 4, 2005, 12:28 PM
Hey Gus,
Can you say more about this flushing technique you are using minus heparin?


This is something I've requested and done on my own research............I've been on dialysis for over 20 years now and being on for a long time and/or sensitive patients may have or develop antibodies which in turn cause allergic reactions to any substance or matertial from the dialyzer and/or lines.........Heparin use for a long time may also trigger antibodies which also contribute to the hypersensitive reactions......it also has been found that blood pressure medicines based on ACE inhibitors also cause problems in some patients..............


How often do you flush and with how much saline?


First I need to prime the lines to get all air out........then once in recirculation I stop machine and throw out the saline bag used for priming..........finally, I add a new saline bag and use only 600 to flush out the lines/dialyzer......the remaining 400 is used to terminate treatment..........this only applies to NxStage machine, I'm sure the approach can be done on other machines but the steps may differ..........I assume flushing the lines with more than necessary saline will give better results......I've went from using 750/750=1500 down to 600 only......the NxStage machine only uses about 600 for priming.......

Do you add to your goal for saline used from the beginning of tx?

Yes, I add .3 to my goal.........rinseback that is.......so for say my weight was 58.0kg and my dry weight is 56.0kg then I'd have 2.0kg to remove but add .3 to 58.0kg divided by 2.5 hours plus .15 equals the UFR I need........


Who gave you this idea?

It's based on research and information provided by research studies and trials.......and by request....I had to request these changes to resolve the issues I was having.........it's something you have to workout with your Doctors and Nurses.......you can also research on your behalf by searching the net for information, but the staff and Doctor should be aware of the situation......

I would be interested to know if it improves your clearance and if you feel better from eliminating heparin

Time will tell and have already eleminated heparin for quite sometime now........I've substituded heparin with baby asprin......worked well for me......dialyzer has been looking well and pressures are very well.......for NxStage, max is about 300..........mine averages at 185-210..........I could also use saline flush every 30min but didn't have to do that.......

.

Gus
January 4, 2005, 12:33 PM
Gus wrote:
No, it does not have sodium profiling or where you can give yourself sodium.........the dialysate has the normal amount of sodium an average person maintains so it's maintained throughout treatment, now if you need more then you'd use the saline shot.......

Please explain this statement. What do you mean by "saline shot"?


Hehe, sorry I confused you....... :P .....it's my medical street slang word for bolus infusion..... where you normally give yourself saline but not as a shot like a needle shot....hehe