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Author Topic: High aluminum  (Read 8827 times)
Angiepkd
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« on: November 08, 2013, 06:30:52 PM »

Hi all!  For the last 3 or 4 months my aluminum level has been climbing.  This month it is up to 30.  I have stopped using antiperspirant, checked my lotions and make up and quit cooking with aluminum pans.  Nothing seems to help.  When I spoke with my nurse today she told me they have several patients whose aluminum levels are elevated, and the doc can't figure it out.  Anyone else have this issue with NxStage?  I use a SAK 303.  Not sure what to do to get those levels down.  Thanks for any help!   :banghead;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
noahvale
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« Reply #1 on: November 08, 2013, 06:55:06 PM »

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« Last Edit: September 19, 2015, 11:39:16 PM by noahvale » Logged
obsidianom
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« Reply #2 on: November 09, 2013, 09:19:32 AM »

Hi all!  For the last 3 or 4 months my aluminum level has been climbing.  This month it is up to 30.  I have stopped using antiperspirant, checked my lotions and make up and quit cooking with aluminum pans.  Nothing seems to help.  When I spoke with my nurse today she told me they have several patients whose aluminum levels are elevated, and the doc can't figure it out.  Anyone else have this issue with NxStage?  I use a SAK 303.  Not sure what to do to get those levels down.  Thanks for any help!   :banghead;

Start with:

* Have your tap water analyzed, especially if used to make the dialysate.

* While most likely not, check to see if your phosphorous binder contains aluminum.  Some of the older, less expensive brands do.

* Check for aluminum in laxatives and/or antacids you use.
Good point. Most antacids contain aluminum hydroxide. The dializer has trouble iliminating this. My nephrologist doesnt want my wife using any aluminum containing product. Heavy metals are hard to eliminate. our well has high amounts aluminum but the Nxstage purifiaction pack eliminates it well. We have been tested regularly and the aluminum in the water initially is not in the dialysate. So more likely it is some aluminum being ingested.
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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.
obsidianom
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« Reply #3 on: November 09, 2013, 09:53:52 AM »

I just checked my environmental reports from this year. Our well tested at very high aluminum, over twice the maximum referance range. however the water from the purification pack on the Nxstage pureflow tested perfect for aluminum. It eliminated the excess aluminum very nicely. It corrected my well issues with aluminum, calcium, copper , and barium. so the unit does what it is supposed to. You can have yours checked as we do yearly but I doubt the machine or the dialysate is the issue for you. It has to be coming from other areas such as your well water you drink if you have a well. You can have yor well tested. We did. or its other things you are ingesting.
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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.
happyonhemo
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« Reply #4 on: November 09, 2013, 03:59:51 PM »

Angie pkd :yahoo;
       I have had this same problem with my aluminum going up to mid 20's. Nobody was able to give me any help other than to suggest avoiding anti-perspirant and aluminum cookware so I had to do my own research.I discovered that almost any baking powder unless organic or otherwise says so:comtains large amounts of aluminum. Therefore anything that is made with baking powder such as pre-made mix;cake mix,muffin or cupcake mix,pancake mix,and any item made with baking powder such as; any.cake or pastry or bread,rolls etc.Fresh or frozen. Once I started avoiding these things then my aluminum finally dropped to 9! Do some research on your own and you shout have good luck! Happy hunting! It works!
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Angiepkd
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« Reply #5 on: November 09, 2013, 07:20:10 PM »

Thanks for the help!  I have had my water tested, as well as my dialysate.  We don't have well water.  My binders do not contain aluminum.  I don't use antacids or laxatives.  I don't use mixes or baking powder, and eat very little bread.  So you can see why I am frustrated!  I will keep searching for the source.  I will let you know if I figure it out.  Thanks again!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
noahvale
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« Reply #6 on: November 09, 2013, 07:40:35 PM »

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« Last Edit: September 19, 2015, 11:38:52 PM by noahvale » Logged
happyonhemo
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« Reply #7 on: November 10, 2013, 09:23:11 AM »

 Unfortunately.all that is true and its impossible to avoid all the unhealthy things in our environment so we do the best we can and be grateful for each new day.As far as aluminum all I can say is what I did worked for me so hopefully you will find some answers to help yourself. I know you said you don't use mixes but that also includes eating anything made from a mix or anything baked with baking powder so ANYTHING baked with flour because that would contain baking powder too. Once I started cutting these things out I was amazed at how little there was left to eat! Well,good luck to u!
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Speedy1wrc
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« Reply #8 on: January 22, 2014, 06:12:26 PM »

Did YOU have your water tested or are you going  by your water districts reports? I get a water quality report every year and it says my water is good. That is, it meets EPA standards which is NOT good enough for the PureFlow. My aluminum is high due to my water. They use aluminum in the process of cleaning waste water. it's used to bind up contaminants, but a lot remains in the cleaned effluent.

I am adding an RO unit to the house to clean up what I drink and use for cooking. My PureFlow product tests ok, but local protocol says that the source water must be less than what I have. The aluminum level in my water is right on the edge. it's not coming through the PureFlow but in everything else I use water for.

Mark
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Maggie and Jeff
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« Reply #9 on: March 31, 2014, 10:57:03 AM »

Aluminum is often found in:
womens deodorant
Wine
Multi vitamins 
« Last Edit: April 08, 2014, 08:05:16 PM by Maggie and Jeff » Logged

The LORD is my light and my salvation--so why should I be afraid? The LORD is my fortress, protecting me from danger, so why should I tremble?

Jeff is the needle pusher Maggie is the pincushion.
Speedy1wrc
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« Reply #10 on: May 19, 2014, 05:40:37 PM »

So obviously the plot thickens...
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Maggie and Jeff
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« Reply #11 on: May 19, 2014, 07:51:59 PM »

NxStage dailiysate 
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The LORD is my light and my salvation--so why should I be afraid? The LORD is my fortress, protecting me from danger, so why should I tremble?

Jeff is the needle pusher Maggie is the pincushion.
Speedy1wrc
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« Reply #12 on: May 19, 2014, 08:33:07 PM »

I've been researching the symptoms and it all makes sense now.
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Angiepkd
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« Reply #13 on: May 20, 2014, 03:53:38 PM »

Funny that most of the early responses to my post insinuated it was something I was doing wrong.  I actually got quite aggravated with some of the suggestions, as I am far from stupid and did my research to make sure I was not ingesting aluminum.  I wrongly assumed that when I sent in my Dialysate samples, they would be checked for aluminum and I would be notified if there was a problem.  Obviously that was not the case.  Glad I am no longer doing dialysis and hope that there is no long term damage to me or anyone else.  Very disappointing.
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Speedy1wrc
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« Reply #14 on: May 20, 2014, 08:36:15 PM »

I think every episode with NxStage is an eye opener. I assumed my water was the issue I was having. Lo and behold. Coming from a chemical manufacturing background I guess I assumed that there was some sort of lot quality control going on. Apparently there was none whatsoever. Paint me scared at what else we don't know about.
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Hemodoc
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« Reply #15 on: May 20, 2014, 10:24:28 PM »

I think every episode with NxStage is an eye opener. I assumed my water was the issue I was having. Lo and behold. Coming from a chemical manufacturing background I guess I assumed that there was some sort of lot quality control going on. Apparently there was none whatsoever. Paint me scared at what else we don't know about.

Exactly, I just assumed that they had the usual quality assurance checks on all of their products. I had always been taught that is the way companies do what they do.
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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.
Speedy1wrc
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« Reply #16 on: May 21, 2014, 06:15:45 AM »

Seems almost a bit hypocritical. We are taught about aseptic techniques and to follow strict procedures for testing our product, yet it apparently it is do as I say, not as I do. My nurse is particularly careful and has taught her patients to be anal about doing things properly. When the NxStage rep comes to town and observes us, I always used to feel every thing I did was being scrutinized. I now take that with a grain of salt. 
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Maggie and Jeff
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« Reply #17 on: May 22, 2014, 11:20:26 AM »

Funny that most of the early responses to my post insinuated it was something I was doing wrong.  I actually got quite aggravated with some of the suggestions, as I am far from stupid and did my research to make sure I was not ingesting aluminum.  I wrongly assumed that when I sent in my Dialysate samples, they would be checked for aluminum and I would be notified if there was a problem.  Obviously that was not the case.  Glad I am no longer doing dialysis and hope that there is no long term damage to me or anyone else.  Very disappointing.

Any way they could start doing that
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The LORD is my light and my salvation--so why should I be afraid? The LORD is my fortress, protecting me from danger, so why should I tremble?

Jeff is the needle pusher Maggie is the pincushion.
Speedy1wrc
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« Reply #18 on: May 22, 2014, 05:40:36 PM »

I will ask.
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