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Author Topic: DRINKING WATER FOR KIDNEY PATIENTS--YES IT MATTERS  (Read 19768 times)
obsidianom
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« on: September 01, 2014, 12:26:05 PM »

Many of you dont read the Nxstage threads so you may not know about the aluminum issue.
Aluminum is a real threat to kidney patients , especially dialysis patients.  Due to the Nxstage problem with aluminum , I was forced to look seriously into sources of aluminum as my wifes aluminum is very high. Dialysis patients have a hard time excreting aluminum and it can build up fast to dangerous levels.

When I looked at my well water it turned out it has abnormally high amounts of aluminum and copper.  I began to research city water also as my wife also drinks water in our office which uses city water. It turns out there are very loose standards for aluminum in the US. Many city water systems add aluminum to help clean the water.

I decided to try bottled water and purchased a Britta water  filter system for my well water.  Thanks to Zach here at IHD I found out the Britta system not only doesnt remove aluminum , IT ADDS 33% more aluminum to water. NOT GOOD. 
The system that tested best was the ZERO WATER system which I just purchased.

Now here is the really interesting stuff!!!!

I now have an electronic water tester that tests particulate matter in water like aluminum and lead and copper etc.     

I tested my well, Britta water filter, Zero water filter, AND 3 TYPES BOTTLED SPRING WATER that should be pure.   WOW was I surprised.!!

To put this is perspective, "good water " should test out at under 50 although it still can have too much of any 1 element like aluminum.  The best would be close to ZERO to be really safe.

RESULTS:
My well with its high aluminum and copper still only tested out at 31 (parts per million)PPM
Britta water tested out at 110 PPM  (not good at all)
Brand 1 Spring water 34 PPM (fair)
Brand 2 Spring water 110 PPM (poor)
Brand 3 Spring Water 120 PPM (poor)
Zero water , LIKE ITS NAME it was 0.  (perfect)

No way to know how much aluminum in any of these , but if my well is very high in aluminum and tests at 31 ,I wouldnt touch any of these sourcesother than Zero water.  In my house that is ALL we will drink now. I will retest my wifes aluminum in a few weeks and see if it improves , or if Nxstage is still a problem.
At least I have eliminated the water source of aluminum for her and me.
(the Zero water system only cost me $44 on amazon for the large container and filters. It should make a lot of good water for us and it fits in the refridgerater.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Jean
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« Reply #1 on: September 01, 2014, 12:30:18 PM »

I have been wanting to get a water filter but read the label on the Britta filter and it had outrageous amounts of potassium in it. How about the Zero one.I am really tired of having to run to the store for water. ( I am pre-D )
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obsidianom
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« Reply #2 on: September 01, 2014, 12:36:11 PM »

I have been wanting to get a water filter but read the label on the Britta filter and it had outrageous amounts of potassium in it. How about the Zero one.I am really tired of having to run to the store for water. ( I am pre-D )
Britta uses mainly a carbon based filter while Zero water uses a 5 step system with mostly ION EXCHANGE filtration which I beleive should remove any ions like potassium. The studies I read were on metals mostly however but my instinct is it should not add potassium like Britta.
Zero water is certified as PURIFIED BOTTLED WATER.

I just sent the company an email asking about potassium just to be safe.
« Last Edit: September 01, 2014, 12:46:41 PM by obsidianom » Logged

My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
jeannea
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« Reply #3 on: September 01, 2014, 02:04:16 PM »

Bottled spring water is not necessarily "pure." It is just bottled elsewhere. The rules for it are minimal.
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Rerun
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« Reply #4 on: September 01, 2014, 09:15:24 PM »

What about an RO unit.  (Reverse Osmosis) 
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obsidianom
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« Reply #5 on: September 02, 2014, 02:28:50 AM »

This is the response I got from Zero Water. It is basically good news.


We do not add any potassium to the water however we are not certified in removing it from the water.

The ZeroWater Filters have been tested and certified by NSF and WQA against the relevant standard for reduction of these substances:
 
Lead 98-99%
Chromium 98-99%
Mercury 91-96%
Hydrogen Sulfide 98.9%
Chlorine 97.5%
Iron 94.8%
Zinc 98.3%
Aluminum 97.5%
Copper 98.8-99.9%
 
We only have certifications for these substances and cannot legally make claims about other substances at this time.
 
Each filter is designed to remove 18,000 milligrams of dissolved solids from your drinking water before needing to be replaced.


 
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
kristina
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« Reply #6 on: September 02, 2014, 03:31:54 AM »

Thanks for your great research, obsidianom and Zach!

Because of the very hard water in London I have been using a Brita-water-filter for quite a few years
and obviously I have to put my thinking cap on straight away ...

P.S. I started to use the Brita water filter many years ago when my water kettle became too calcified
because of the high calcium content in the London drinking water...

At my next appointment with the neph, I shall enquire about this question,
because my potassium levels have been completely normal (touch wood !),
but it should be interesting to find out if there is anything I can improve, i.e. my drinking water filter system etc....

Thanks again for your research from Kristina.
« Last Edit: September 02, 2014, 07:33:03 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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jeannea
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« Reply #7 on: September 02, 2014, 10:22:46 AM »

Someone bought me a Brita water pitcher/filter. I used it a bit but I didn't like how the filtered water tasted so I stopped. It does make a great pitcher though without the filter in it.

If you can afford it, you should probably get your water tested. There are labs that will do it for you. If you are using a municipal water system, I think they have to provide you with their testing results if you request them. Don't spend a lot on filtering unless you truly need to.
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obsidianom
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« Reply #8 on: September 02, 2014, 12:11:23 PM »

I had my well tested and it came back with high aluminum which is very dangerous for dialysis patients.
What is interesting is that it measures very low in contaminants at 31 , but the aluminum is the main source. So you never know.
One thing I have learned from all my research is that there is aluminum in almost everything and many wells and municipal water systems are quite high in it.
Most renal patients dont regularly test their blood levels of aluminum and may not know how high it is . We recently had a patient near us who uses a well also test out at 27 on her blood  aluminum BEFORE she ever had dialysis.  The aluminum came from the environment . 27 is quite high and not good for any one.
 All I can say is $44 for gallons and gallons of pure water is worth it to me and my wife.
« Last Edit: September 02, 2014, 12:12:28 PM by obsidianom » Logged

My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Jean
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« Reply #9 on: September 02, 2014, 01:03:32 PM »

Thanks for the research guys. No doubt in my mind that our water is bad, since some times it actually smells like rotten eggs. So, yes, $44.00 is a bargain and our bodies are getting too old and tired to carry cases of water into the house.
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kristina
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« Reply #10 on: September 03, 2014, 02:31:01 AM »

Someone bought me a Brita water pitcher/filter. I used it a bit but I didn't like how the filtered water tasted so I stopped. It does make a great pitcher though without the filter in it.

If you can afford it, you should probably get your water tested. There are labs that will do it for you. If you are using a municipal water system, I think they have to provide you with their testing results if you request them. Don't spend a lot on filtering unless you truly need to.

Hello jeannea,
I did write to the London water suppliers and they send me a paper, indicating that the London drinking water is perfectly alright.
But this paper did not explain, why every water kettle in my little household in Central London
became calcified after only a short while and “gave up functioning” as a result...
According to the report of the London water suppliers, there is hardly anything in the London drinking water to calcify my water kettle ...
...This report made me wonder, because I need to protect my health and my kidneys and if I would drink calcified water without any filtering,
my “two little fighters” might look after a short time like all these abandoned calcified water kettles... ?
... In fact, I was even wondering at times, whether this calcified London drinking water contributed – over time – 
to my end stage kidney failure diagnosed in August 2006? I wonder about it, because by filtering my drinking/cooking water ever since,
plus upgrading my vegetarian diet even further, I could keep myself pre-dialysis to this very day...
... despite my suffering from chronic proliferative glomerulonephritis with hypertension since 1971...
(I do hope very much, that I continue to be pre-dialysis for a little longer... touch wood...)

Kind regards from Kristina.
« Last Edit: September 03, 2014, 02:52:17 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
jeannea
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« Reply #11 on: September 03, 2014, 09:47:46 AM »

Kristina, I was thinking of the US not the UK. I believe that here in the US they are required to give more detailed results.
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Sugarlump
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« Reply #12 on: September 03, 2014, 12:52:26 PM »

I only drink bottled water (Evian or Volvic from France) make ice from this and use a brita-filtered kettle for tea.
Be interested to know what their levels are in the bottled stuff.
I know there is aluminium, copper and fluoride in our local water which is why I don't drink it.
We are tested for aluminium levels each month but mine are quite low?
Apparently if you use aluminium cooking pots and pans that can add aluminium to your diet too  :waving;
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Hemodoc
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« Reply #13 on: September 03, 2014, 05:46:19 PM »

GI absorption of aluminum is quite thankfully minimal. I have not changed my habits since getting high aluminums AND realizing that the source was NxStage. Yes, I did modify my diet, get rid of all aluminum pans, etc. However, it is direct membrane transfer of aluminum that is the biggest issue with dialysis patients.

Certainly, avoiding aluminum in any manner possible is a good strategy, but the entire aluminum issue was a non-issue for the majority of us until NxStage began to poison us.

I still drink my bottled water and I am not going to test it. I did send in a new blue top tube today to see what my aluminum levels are now two months off of the PureFlow. My levels prior to being poisoned by NxStage were always undetectable. I will see how long it takes to return to that respect.

However, if anyone wishes to have aluminum free water for drinking, put in an RO unit for drinking water and that will provide the best clearances of aluminum. Is that necessary for most? Probably not, but if your water has tested high, that is perhaps the best solution.
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Peter Laird, MD
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Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
Charlie B53
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« Reply #14 on: September 03, 2014, 05:54:30 PM »

One of my college instructors was a retired Med Dr fom Wisconsin, IIRC.  He tells about a number of kidney patients because of the high alum content in their water, plus the dominence of alum cookware, and alum drinking glass that were so popular in the late 50's and early 60's.  He claimed remarkable success when patients were 'weaned' from using the aluminum products and a good water filtration system.

He also warned about the abundance of alum in many of today's deodorants, daily application is not a good thing.

I too am curious as to how well an R.O. system works.  I put one under the kitchen sink years ago to keep my coffee pot (glass) from crusting up.
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Hemodoc
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« Reply #15 on: September 03, 2014, 06:25:35 PM »

If you look at the history of aluminum "outbreaks" in dialysis patients, it almost always comes back to improper water treatment or other types of aluminum contamination. Here is a very interesting article. One aspect of the article is that many countries still use aluminum binders without any problems. GI absorption of aluminum is not the biggest danger to dialysis patients. Contaminated dialysis is.

http://www.biomedcentral.com/1471-2369/12/20
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
kristina
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« Reply #16 on: September 04, 2014, 02:09:35 AM »

Kristina, I was thinking of the US not the UK. I believe that here in the US they are required to give more detailed results.

Thank you jeannea. You are very lucky to receive more detailed results in the US... unfortunatly no such luck here...
... most of our "papers" and "research results" are often meant as an "appeasement"... without much basis to rely on...
... Unfortunately this often results in unnecessary stress and confusion ...
... for example: right now the public is being urged (through all the media), to be on the alert for terrorist attacks... at all times...
.... but at the same time most of our police stations are either being closed down ...
or they are in the process of being closed down... how does anyone explain this...?
... People would not even know where to go, if they would notice anything suspicious...
... because they don't even have a local police station to go to...  :(
« Last Edit: September 04, 2014, 05:45:55 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Sugarlump
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« Reply #17 on: September 05, 2014, 08:44:50 AM »

Kristina, I was thinking of the US not the UK. I believe that here in the US they are required to give more detailed results.

Thank you jeannea. You are very lucky to receive more detailed results in the US... unfortunatly no such luck here...
... most of our "papers" and "research results" are often meant as an "appeasement"... without much basis to rely on...
... Unfortunately this often results in unnecessary stress and confusion ...
... for example: right now the public is being urged (through all the media), to be on the alert for terrorist attacks... at all times...
.... but at the same time most of our police stations are either being closed down ...
or they are in the process of being closed down... how does anyone explain this...?
... People would not even know where to go, if they would notice anything suspicious...
... because they don't even have a local police station to go to...  :(
Yes, and they try to promote multi-cultural society and anti-racism
and in the same breath warn us about terrorists and Isis and Russia now.
The Government tells us only what they want us to know (or think)
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
kristina
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« Reply #18 on: September 06, 2014, 02:33:19 AM »

... That is very true, Sugarlump...

... and the way they go about it,
just goes to show us how very confused they are themselves...
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
noahvale
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« Reply #19 on: September 06, 2014, 06:21:12 AM »

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« Last Edit: September 18, 2015, 08:17:12 PM by noahvale » Logged
noahvale
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« Reply #20 on: September 06, 2014, 06:22:24 AM »

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jeannea
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« Reply #21 on: September 06, 2014, 11:56:55 AM »

For me, I'm not sure how drinking water turns into racism. I hope that most of us are drinking safe water. I know that I can only afford to pay for my tap water. Filtering systems are not in my budget. I think that those of us in US, UK, Australia, Germany, etc. have access to decent water. Occasionally we hear from people on dialysis in some other countries where I wonder what access they have.
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PrimeTimer
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« Reply #22 on: September 06, 2014, 11:19:27 PM »

For me, I'm not sure how drinking water turns into racism. I hope that most of us are drinking safe water. I know that I can only afford to pay for my tap water. Filtering systems are not in my budget. I think that those of us in US, UK, Australia, Germany, etc. have access to decent water. Occasionally we hear from people on dialysis in some other countries where I wonder what access they have.

My husband's aluminum came back "15". Since they never took a baseline when he started hemo at the center and then home-hemo using the Pureflow SAK's in December, we have no idea if it's risen or not. We do know that he didn't use any of the tainted SAK's. We don't yet know what his Neph will say about his level being at 15 but I sure hope we can have him tested again in a month or so. Meanwhile, we are very interested in the Zero filter and it doesn't sound overly expensive at all but...like you, it just ain't in our budget right now. Hopefully soon tho. As for ISIS and terrorists and racism...perhaps on another thread but I will say this; I take their threats seriously, as I have never forgotten nor will I ever forget 9/11.
« Last Edit: September 06, 2014, 11:21:08 PM by PrimeTimer » Logged

Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Sugarlump
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« Reply #23 on: September 07, 2014, 01:51:09 AM »


Yes, and they try to promote multi-cultural society and anti-racism
and in the same breath warn us about terrorists and Isis and Russia now.
The Government tells us only what they want us to know (or think)

So let me get this straight - You equate your government's warning about Islamic terrorists (have you read about the recent beheadings of 2 journalists?), who want to destroy western culture as we know it, and Russia's unprovoked invasion into The Ukraine, a sovereign nation, to promoting multiculturalism and anti-racism? 

EDIT: To Administrators/Moderators - I fully realize this has gotten off topic and should be to the appropriate board.  However, I could not let the above comment go without a response.

I think you misread my comment Mister Noahvale.
I implied that our government wants us to embrace our immigrants within a multi-cultural society and in the same breath warns us about them as a terrorist threat
And i have no sympathies with the birth of Isis and their brutality at all. Russia is a whole new ballgame. But dropping bombs or invading is not the answer.
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
kristina
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« Reply #24 on: September 07, 2014, 03:37:13 AM »

... That is very true, Sugarlump...

... and the way they go about it,
just goes to show us how very confused they are themselves...

And what exactly are they confused about?

EDIT: To Administrators/Moderators -  Once again, I fully realize this has gotten off topic and should be to the appropriate board.  However, I could not let the above comment go without a response.


I think you have misread my message, Mr. Noahvale... because I am not a mind-reader...
... but it appears that governments take instructions on a periodic basis...
...Meanwhile in the interim they are left to their own devices to answer questions put to them by the public and the media...
... which they often appear to answer in a very confused way, because they are not thinking individuals
... but appear to be merely puppets awaiting furter instrucitons...
... But, there again, as I have mentioned above,
I am not a mind-reader and I certainly don't know what it is really all about...
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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