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Author Topic: Time to End the Aluminum Crises  (Read 39206 times)
obsidianom
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« on: August 27, 2014, 12:46:22 PM »

Ok folks I have some important news.
To start off I have no financial or other ties to nxstage and am completely neutral in my thinking and writing. In fact some of you know well I had a lot to do with uncovering the facts in the aluminum mess. So what I am about to write is from some more behind the scenes work . Time to see the truth.

I had our sak tested last week . Now to start, I want all to know our well is quite full of aluminum . It measures .238 which is well above normal safe levels.
The Pak alone dropped the aluminum to under .005. Not bad.
Now we tested the final product, the sak (304).   We tested all the chemicals including aluminum. Despite our poor water, it measured LESS THEN .005. That is about as good as it gets. It also measured each electrolyte. And low and behold they did a good job at Nxstage.    sodium was 139, (140 is listed) potassium 2.2(2.0 listed) calcium 3.0 (listed 3.0) and magnesium 1.0(1.0 listed).  So they are dead on target.

Now here is the interesting part. My clinic nurse is working with me on this . My wife has a high aluminum at current 36 . it was 44 after the tainted saks. Unfortunatly we didnt have a test done anytime in the past to see where she started. So we never knew how much is the sak and how much is our well.
So we tested an other patient nearby on a well BEFORE SHE EVER STARTED DIALYSIS.  She measured 27.  SO-----the well appears to be an issue for her too.
We live in a rural area notorius for well problems . My nurse and her husband almost died from arsenic in their well (it was over 200 and should be under 10.)
Thanks to Zach here at IHD we found Brtitta filters ADD aluminum to water . Both my wife and this other patient use Britta filters. That added to the problem
( i am switching to Zero water which clears 100% of aluminum).

So with all the hysteria on Nxstage we all forgot that many of us may already be high in aluminum just from other sources.  In fact if the Nxstage problem hadnt ocurred we still would be drinking tainted water. Everyone may want to check their own water. My nurse told me at least around my state they dont test aluminum in water when a house sells like they do for other chemicals. It is not really toxic to non dialysis patients. So many of you out there may be drinking high aluminum water and not know it. IT ISNT ALL NXSTAGE.   
I had rectal cancer at age 52 . Yet I am healthy active athlete with no family history of this. Now I am wondering if it could be my well which I have used for 25 years here. It is high in many heavy metals it turns out. If we hadnt tested it recently I never would have known.

Botton line. I beleive Nxstage has cleared up the aluminum problem. Period. yes they screwed up and I am unhappy . But it does appear they have fixed it. I will contiue to use Pureflow . I will however only use filtered or bottled water . (thank you Zach).    Stay away from Britta.
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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.
caregivertech1
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« Reply #1 on: August 27, 2014, 02:58:30 PM »

Dr O, I hear what you're saying and that might be your problem .  However we went from zero to 25 in a few months last year. Our city water was very low in AL. We switched to bottled water anyway for drinking, cooking, even brushing teeth. We got rid of all our aluminum cookware.....everything, and went to stainless steel. We changed all meds that we're made with talc to other meds. All foods with a hint of AL in their processing were eliminated. Deoderant  with AL along with body creams were discarded. We've been doing this for more than a year and no effect on serum AL until just the last few months when I started using bags for the last 5 and 10 liters of treatment. I think NxStage is purging their 10 microgram limit product and by fall hopefully It will be OK. Maybe your wife's 40 is 20 from your high well content and 20 from the Saks? Who really knows but what you're doing has to help.
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« Reply #2 on: August 27, 2014, 10:18:44 PM »

I hope you are right and they have corrected the problem.  My water was tested, as was my blood for aluminum the first day I started D and all of the results were in the normal range.  My aluminum climbed to 30 while using contaminated SAK's.  I removed all of the potential sources of aluminum just as caregivertech1 did.  I am not as angry about the mistake being made as I am with the way they handled it.  If I have to do D again, I will have a very hard time trusting NxStage.  Hopefully, there will be better options available when/if that time comes.  The whole thing reeks of cover-up and putting financial gain ahead of patients health. I guess I am naive enough to think that companies providing life saving medical supplies can do so without injuring patients, while still making money.  Silly me.
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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!
Hemodoc
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« Reply #3 on: August 28, 2014, 09:15:58 PM »

Dr. O, sorry, but I will pass on your advice just to go along and get along with NxStage. Sorry, but I am done trusting this company forever.

I am 7 weeks out of the PureFlow and feeling SO MUCH better. My Hb bounced, yes, bounced up in one month after going to my lowest level ever.

I see you have the same exact result as another patient also with Spectra labs. That is NOT consistent with lab testing to get the same exact result without any variation. I am still looking at independent, non-diaysis related testing. Should have that soon. I seriously doubt that testing will come back exactly as the Spectra lab.

So, sorry, but I strongly disagree with your assessment that this is only hysteria.

Take care.
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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.
Hemodoc
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« Reply #4 on: August 28, 2014, 09:22:42 PM »

Dr O, I hear what you're saying and that might be your problem .  However we went from zero to 25 in a few months last year. Our city water was very low in AL. We switched to bottled water anyway for drinking, cooking, even brushing teeth. We got rid of all our aluminum cookware.....everything, and went to stainless steel. We changed all meds that we're made with talc to other meds. All foods with a hint of AL in their processing were eliminated. Deoderant  with AL along with body creams were discarded. We've been doing this for more than a year and no effect on serum AL until just the last few months when I started using bags for the last 5 and 10 liters of treatment. I think NxStage is purging their 10 microgram limit product and by fall hopefully It will be OK. Maybe your wife's 40 is 20 from your high well content and 20 from the Saks? Who really knows but what you're doing has to help.

My levels in May on the recalled PureFlow product was 14. Doesn't sound like much but I did have significant symptoms and lowered Hb levels.

My levels in July, 2 months after the recall WENT UP to 17. Doesn't sound like much, but my Hb went DOWN to 9.5 and I felt like, well, fill in the blank.

One month after I stopped the PureFlow, in August 2 weeks ago, my aluminum was down to 13, my Hb went UP to 10.4.

If folks wish to stay on the PureFlow, that is up to them, but no NxStage has NOT fixed anything. I will have the testing to show that soon.
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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.
Maggie and Jeff
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« Reply #5 on: August 28, 2014, 10:49:49 PM »

Maggies results mirror hemodocs.

We have been measuring AL all along and last year fixed even the drinking water, deodorant...yada yada

Maggies AL went up to 10 over a year ago then spiked at 18 after the recall. 

Using hanging bags she is down to 13.

I hope nxstage fixes the issue but I will always want to double check them and complain if levels are not right.
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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.
obsidianom
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« Reply #6 on: August 29, 2014, 03:10:47 AM »

Guys and gals , I respect your opinions but I still dont see what you are writing as necessarily indicating what you are concluding.
First off, the aluminum levels you are both working with are fairly low and well within lab variation. I have been looking at lab values long enough to know that there can be wide variations in ANY lab value at various times . Writing about aluminums going from 13 to 17  is just not a big differance and could be partly or all simple variations. 
Maggie, your aluminum is `13 with the hanging bags. I dont see that as any better then the 10 you were at in the past. It could have ocurred anyway with the Pureflow. You cant prove it was just the bags anyway.
Peter, you could have it backwards. The HG drop could have caused the symptoms and fixing that could have solved it. The aluminum didnt change that much and could have been incidental. We both know in medicine you cant always assume cause and effect without large scale numbers of tests.
I looked at water standards in some municipalities and they allow aluminum at  .2 which is actually quite high.  I never looked into this before. It was an eye opener. WE are bombarded with aluminum from all over. Who knew the Britta filter would ADD aluminum.
My nurses other patient with the aluminum of 27 sure didnt get it from Nxstage. I think we all may be seeing the truth that aluminum is all over and we never realized it. It is ubiquitus.
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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.
Hemodoc
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« Reply #7 on: August 29, 2014, 06:29:42 AM »

Dr. O, I will respectfully agree to disagree with your assessment.

FYI, a well respected epidemiologist wants to write up my case and others based on just the information I have discussed here several times. We will see if that actually happens, but indeed, we have had some serious discussions of doing just that.

It is real and there is literature from 30 years ago to support that it is real and not alleged lab variation whatsoever.

Lastly, I had NO OTHER treatment whatsoever and it went from 9.5 to 10.4 and also, my TSAT went from 22% to 30%. No iron, no EPO, just got  rid of horrible NxStage debacle from my treatment. Sorry, but you may declare all you want that NxStage is wonderful again, but that doesn't make it true.

These are real results and my experience is that of many, many other people who have noted the same thing here and several other social media outlets. Folks can make up their own mind, but shucks, do you really want to accept poison into your system for any reason when you have a choice right now available to avoid it?

And yes, aluminum is the third most common element and yes it is everywhere. That is why removing it from dialysate is such an important aspect of modern dialysis systems.

Take care.
« Last Edit: August 29, 2014, 06:34:28 AM by Hemodoc » Logged

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.
obsidianom
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« Reply #8 on: August 29, 2014, 08:38:36 AM »

Dr. O, I will respectfully agree to disagree with your assessment.

FYI, a well respected epidemiologist wants to write up my case and others based on just the information I have discussed here several times. We will see if that actually happens, but indeed, we have had some serious discussions of doing just that.

It is real and there is literature from 30 years ago to support that it is real and not alleged lab variation whatsoever.

Lastly, I had NO OTHER treatment whatsoever and it went from 9.5 to 10.4 and also, my TSAT went from 22% to 30%. No iron, no EPO, just got  rid of horrible NxStage debacle from my treatment. Sorry, but you may declare all you want that NxStage is wonderful again, but that doesn't make it true.

These are real results and my experience is that of many, many other people who have noted the same thing here and several other social media outlets. Folks can make up their own mind, but shucks, do you really want to accept poison into your system for any reason when you have a choice right now available to avoid it?

And yes, aluminum is the third most common element and yes it is everywhere. That is why removing it from dialysate is such an important aspect of modern dialysis systems.

Take care.
I dont think I am declaring Nxstage is wonderful. I am angry about the whole aluminum debacle. But i do think that they have at least currently fixed the problem. My test showed as low aluminum in the SAK dialysate as in the hanging bags. So what is there to gain in the bags?.
My wife has had anemia lately with her aluminum dropping. But when it was at 44 (highest maesured) she had a Hg of about 11.5.  So you cant coorealte this . There are so many causes for low Hg including just the kidneys themselves, loss of blood in 5 day dialysis , many factors in the body effecting iron absorbtion and bone marrow itself. Inflammation (which dialysis causes) can cause anemia.
Epidemiological studies would not use anecdotal evidence alone like you are using to prove cause and effect.
At the least you need to try the same conditions a second time with the higher aluminum and retest the anemia and then stop the aluminum again and retest. That type challenge test is common in medicine whe testing a medication for effects or side effects. All you have is one time test here. That proves nothing.
My other question Peter, is did you recently teest your PAK and the machine itself? The saks could be ok , but if your machine and the paksarent working you still could have issues. We tested both SAK and Pak.
You know better then anybody how I dug up info on Nxstage as I was so angry about the aluminum. But I have to go with what I am seeing now to give my current status . I feel the pureflow is safe now. (it could go bad again, but so could anything).
I am glad your Hg is better and you feel better.
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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.
Maggie and Jeff
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« Reply #9 on: August 29, 2014, 09:04:03 PM »

I would like to respectfully weigh in:

Maggie, your aluminum is `13 with the hanging bags. I dont see that as any better then the 10 you were at in the past. It could have ocurred anyway with the Pureflow. You cant prove it was just the bags anyway.

I agree 10 is not good. 

That is why we tested our water and Pak water for AL

We found:

We have a good bit of AL in the well water.

The freshly expired PAK showed less than <.005

I could find the last AAMI on the well water all I remember is it is well above .005.

So we've been using a ionized water filter that removes the AL and everything else.

The filtered water feeds the ice maker (Maggie eats her ice) and the drinking water.

I fixed the water about 8 months ago

And yes, aluminum is the third most common element and yes it is everywhere. That is why removing it from dialysate is such an important aspect of modern dialysis systems.

When Maggie started having AL of 8ish almost 2 years ago we stared removing all the the AL we could from her environment and we have not stopped looking.  When it kept going up I figured out how to get the AL free water.  My thought was bottled water may have some AL as it is not technically a toxin to most people.

Peter, you could have it backwards. The HG drop could have caused the symptoms and fixing that could have solved it. The aluminum didnt change that much and could have been incidental. We both know in medicine you cant always assume cause and effect without large scale numbers of tests.
I looked at water standards in some municipalities and they allow aluminum at  .2 which is actually quite high.  I never looked into this before. It was an eye opener. WE are bombarded with aluminum from all over. Who knew the Britta filter would ADD aluminum.
My nurses other patient with the aluminum of 27 sure didnt get it from Nxstage. I think we all may be seeing the truth that aluminum is all over and we never realized it. It is ubiquitus.


Maggie's HG dropped and put her back on epo about 2-3 months ago.  Last lab showed 10.4.   I'm thinking we need to increase the epo seeing as the previous lab was 10.9.


I'm just sharing what Maggie and I have been doing to lower the AL.  We just don't trust that the Saks are as AL free as the hanging bags seem to be.

You said
I had our sak tested last week . Now to start, I want all to know our well is quite full of aluminum . It measures .238 which is well above normal safe levels.
The Pak alone dropped the aluminum to under .005. Not bad.
Now we tested the final product, the sak (304).   We tested all the chemicals including aluminum. Despite our poor water, it measured LESS THEN .005.


Could you post the results? I'd like to see them.  Maggie uses 304, well she did, now she is using 209's.

http://www.nxstage.com/homehemodialysis/products/fluids


List of National Secondary Drinking Water Regulations
Contaminant   Secondary Standard
Aluminum   0.05 to 0.2 mg/L

http://water.epa.gov/drink/contaminants/index.cfm#List
Near the bottom of the page.
« Last Edit: August 29, 2014, 10:48:56 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.
obsidianom
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« Reply #10 on: August 30, 2014, 05:36:14 AM »

I would like to respectfully weigh in:

Maggie, your aluminum is `13 with the hanging bags. I dont see that as any better then the 10 you were at in the past. It could have ocurred anyway with the Pureflow. You cant prove it was just the bags anyway.

I agree 10 is not good. 

That is why we tested our water and Pak water for AL

We found:

We have a good bit of AL in the well water.

The freshly expired PAK showed less than <.005

I could find the last AAMI on the well water all I remember is it is well above .005.

So we've been using a ionized water filter that removes the AL and everything else.

The filtered water feeds the ice maker (Maggie eats her ice) and the drinking water.

I fixed the water about 8 months ago

And yes, aluminum is the third most common element and yes it is everywhere. That is why removing it from dialysate is such an important aspect of modern dialysis systems.

When Maggie started having AL of 8ish almost 2 years ago we stared removing all the the AL we could from her environment and we have not stopped looking.  When it kept going up I figured out how to get the AL free water.  My thought was bottled water may have some AL as it is not technically a toxin to most people.

Peter, you could have it backwards. The HG drop could have caused the symptoms and fixing that could have solved it. The aluminum didnt change that much and could have been incidental. We both know in medicine you cant always assume cause and effect without large scale numbers of tests.
I looked at water standards in some municipalities and they allow aluminum at  .2 which is actually quite high.  I never looked into this before. It was an eye opener. WE are bombarded with aluminum from all over. Who knew the Britta filter would ADD aluminum.
My nurses other patient with the aluminum of 27 sure didnt get it from Nxstage. I think we all may be seeing the truth that aluminum is all over and we never realized it. It is ubiquitus.


Maggie's HG dropped and put her back on epo about 2-3 months ago.  Last lab showed 10.4.   I'm thinking we need to increase the epo seeing as the previous lab was 10.9.


I'm just sharing what Maggie and I have been doing to lower the AL.  We just don't trust that the Saks are as AL free as the hanging bags seem to be.

You said
I had our sak tested last week . Now to start, I want all to know our well is quite full of aluminum . It measures .238 which is well above normal safe levels.
The Pak alone dropped the aluminum to under .005. Not bad.
Now we tested the final product, the sak (304).   We tested all the chemicals including aluminum. Despite our poor water, it measured LESS THEN .005.


Could you post the results? I'd like to see them.  Maggie uses 304, well she did, now she is using 209's.

http://www.nxstage.com/homehemodialysis/products/fluids


List of National Secondary Drinking Water Regulations
Contaminant   Secondary Standard
Aluminum   0.05 to 0.2 mg/L

http://water.epa.gov/drink/contaminants/index.cfm#List
Near the bottom of the page.
I d;ont know how to post the actual report but here are the results:

Now we tested the final product, the sak (304).   We tested all the chemicals including aluminum. Despite our poor water, it measured LESS THEN .005. That is about as good as it gets. It also measured each electrolyte. And low and behold they did a good job at Nxstage.    sodium was 139, (140 is listed) potassium 2.2(2.0 listed) calcium 3.0 (listed 3.0) and magnesium 1.0(1.0 listed).  So they are dead on target.

Now I have been thinking about all this aluminum controversy. Could it be that ALL dialysis patients are chronically high in aluminum? I wonder how many are tested BEFORE dialysis starts? WE didnt do that , did any of you out there? 
My theory is that all dialysis patients are higher then they should be in aluminum due to the disorder itself. There is aluminum everywhere and the damaged kidneys just cant clear it like a non renal person. Perhaps all dialysis patients are in the 10 to 20 range. It would be an interesting study PRE DIALYSIS and then to follow during a year of dialysis.
The patient I mentioned around my area that was tested pre dialysis the other day was at 27. That is all from the environment and the failing kidneys.
I think we all are blaming Nxstage for ALL our elevated aluminum when they may have only been responsible for it occurring for a few months and now are back to normal. What we are seeing now with these aluminums of 10 to 18 is just the normal for dialysis patients.
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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 #11 on: August 30, 2014, 05:52:55 AM »

In response to you Peter, I post your own post from the other day.

  Re: Sak Recall
« Reply #293 on: August 23, 2014, 05:49:57 PM »   

--------------------------------------------------------------------------------
r. O, that is an incredibly important lab. It will be the first one yet reported on the current levels in the SAKs. The guidelines state that anyone with "aluminum overload" which I have seen defined in one paper as anything above a serum level of 30, should first be treated with aluminum free dialysate defined as <5 mcg/liter.

If your wife is still at a level of 36, then circumstantial evidence is that the levels are closer to 10 mcg/liter than to 5.

Thank you for getting this test done. It is time for NxStage to stop poisoning us.

Peter


Well , my test shows an aluminum UNDER .005.  Based on your own post Nxstage has fixed the problem. Technically the dialysate is now aluminum free. (under 5 mcg/lt)
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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.
noahvale
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« Reply #12 on: August 30, 2014, 06:36:43 AM »

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obsidianom
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« Reply #13 on: August 30, 2014, 07:51:09 AM »



Now I have been thinking about all this aluminum controversy. Could it be that ALL dialysis patients are chronically high in aluminum? I wonder how many are tested BEFORE dialysis starts? WE didnt do that , did any of you out there? 
My theory is that all dialysis patients are higher then they should be in aluminum due to the disorder itself. There is aluminum everywhere and the damaged kidneys just cant clear it like a non renal person. Perhaps all dialysis patients are in the 10 to 20 range. It would be an interesting study PRE DIALYSIS and then to follow during a year of dialysis.
The patient I mentioned around my area that was tested pre dialysis the other day was at 27. That is all from the environment and the failing kidneys.
I think we all are blaming Nxstage for ALL our elevated aluminum when they may have only been responsible for it occurring for a few months and now are back to normal. What we are seeing now with these aluminums of 10 to 18 is just the normal for dialysis patients.


In my 23 years of (incenter) dialysis, only time my aluminum level was EVER over 13 was back in the 1980s when on an aluminum based binder, Alternagel.  Most of us who used this product had great phos levels, but had to deal over time with high Al.  Many centers would include periodic deforoxemine treatment and using a charcoal filter in addition to the dialyzer to bring Al levels back down. 

However, Al blood levels should no longer be a concern with the advent of Al free binders like renvela and fosrenol.  Unless dialysis facilities are doing poor jobs of water purification, patients some how absorbing large amounts of Al through diet or other means (including toxic well water) and/or through lax product manufacturing oversight (NxStage), then Al blood levels should not be above 10.  My Al was last checked 2 months ago and came back 3.  This was through a lab not affiliated w/either DaVita or Fresenius.

EDIT:  If on NxStage instead of incenter, I would rr on the side of caution[/b] like Hemodoc and some of the others who have posted on here, and stay with the bags.
Here is the problem. Each of us here is one person with one case. I would like to see hundreds of cases with various water sources from well to city.
Alll we have here is anecdotal evidence. I have learned so much in 25 plus years in prctice about making the mistake of looking at a few cases and making vast generalizations.
So many medical studies that looked definitive turned out to be wrong because not enough patients or variability was included. WE  have seen this in hormone therapy in males and females for one huge example. One study of thousands of VA patients showed testosterone therapy "caused' heart problems. But low and behold that has now been bebunked with other studies of other type patients showing the OPOSITE. In fcat testosterone may aid in cardiac health.
Same is true of estogen in  post menpausal women. We went back and forth on this from good to bad to nwo cautiosly good.
I can name many other studies doing the same thing.
Until I see hundreds of aluminum levels on kidney patients pre dialysis and then ongoing, I am not convinced there is anything there . My pre dialysis  patient with the aluminum of 27 is also anecdotal but shows how a few patients can  sway our figures.
everybody here on this board is JUSTIFYABLY angry at Nxstage . I am too. But some have let that color their thinking to the point that Nxstage is responsible for every aluminum level above 10 and every symptom .  Aluminum by the way doesnt cause a regular anemia. It cause a MICROCYTIC anemia only. This si anemia with very specific characteristics. The red cells are formed but are very small due to lack of iron. My wife with her 36 aluminum has anemia but it is NORMOCYTIC which means her cells are normal size , just too few cells . That is classic kidney failure anemia , not aluminum anemia.
Everyone with anemia here should look at thier reports and see if the anemia is small red cell . If it is not, dont blame the aluminum. It is the kidneys.
It is easy to get in a lather and blame aluminum for every symptom. But good science and medicine requires we look at facts , not emotions. Emotions are running high here. I am trying to look at this unemotionally. I still see a sak from Nxstage scientifically measured at UNDER .005 aluminum , which is considered aluminum free by standards. That is FACT , not emotion.
Now my wife has high aluminum levels. Yet other patients in our area on Nxstage have much lower levels. So for me to blame just Nxstage makes little sense. The facts here indicate my wife has other causes. Perhaps it is our well . Also she has a damaged GI system that may absorb more aluminum then other patients. That is an unknown factor. I just cant justify blaming only Nxstage now. If a study is done with hundreds of patients showing the same results, then I will listen. Until then it is just anecdotal , and nothing more.

This from Medscape:

Aluminum also has a direct effect on hematopoiesis. Excess aluminum has been shown to induce microcytic anemia.
Patients with anemia from aluminum toxicity often have increased reticulocyte counts, decreased mean corpuscular volume, and mean corpuscular hemoglobin.
« Last Edit: August 30, 2014, 08:10:48 AM by obsidianom » Logged

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« Reply #14 on: August 30, 2014, 08:06:21 AM »

On ALUMINUM, please note the following from medscape.

Mayor et al suggested that parathyroid hormone may increase intestinal absorption of aluminum.[5]

Most all dialysis patients have high PTH hormone which increases intestinal absorbtion of aluminum. So water with any aluminum can be a real issue here. More aluminum then normal will be absobed through the gut. ( Nxstage didnt cause this).

VERY INTERESTING ;

"In a recent study we found that levels of bone aluminum were elevated in nearly all patients undergoing hemodialysis, especially those with osteomalacia." (Hodsman"

« Last Edit: August 30, 2014, 08:51:20 AM by obsidianom » Logged

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NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

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« Reply #15 on: August 30, 2014, 08:42:27 AM »

NOW PERHAPS THIS IS THE SMOKING GUN ON ALUMINUM ISSUE AND NXSTAGE.
THIS IS FROM MEDSCAPE:

"Lactate, citrate, and ascorbate all facilitate GI absorption. "
 
 Well ---isnt that interesting. Nxstage uses LACTATE as its dialysate base. Maybe now we know the real story. The lactate may be aiding in aluminum absorbtion. It is not the aluminum in the dialysate now , it is the lactate causing increased aluminum absorbtion IN THE GUT. That may explain my wifes high number as we have a lot of aluminum in our well and the lactate is cuasing high gut absorbtion.
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« Reply #16 on: August 30, 2014, 10:16:53 AM »

Maggie has never been in center she started on dialysis in 2006.
in 2008 her AL peaked at 12
in 2009 it was <10
in 2014 peaked at 18
and is now showing 13

The fact when we tested the SAK dialysate and it showed .005  on 2 separate SAK's was not the only reason we switched to the bags. 

Here is a list of other stuff that was elevated.

I posted 2 separate SAK lot # tests Both showed .005

I posted 1 Hanging bag test it showed Less Than (Or as I was corrected earlier)<.005

I figure less than <.005 is as low as the lab can test.  So the first reading on the lab instrument would be .005 maybe even if there was .003 it would still show .005.

I saw that the SAK's had elevated:
Aluminum @ .005 & .005
Chromium @ .006 & .007
Copper     @ .007
Zinc         @ .005
sulfate      @ 1.4  & 1.3

The hanging bags had this elevated:
Zinc .045

We have a AAMI out to the lab on our hanging bags so I'll have those results soon.


I'm just trying to do what is best for my lovely wife and the bags seem to have less contaminates.

http://ihatedialysis.com/forum/index.php?topic=31141.msg485946#msg485946
« Last Edit: August 30, 2014, 10:22:08 AM by Maggie and Jeff » Logged

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« Reply #17 on: August 30, 2014, 10:39:06 AM »

NOW PERHAPS THIS IS THE SMOKING GUN ON ALUMINUM ISSUE AND NXSTAGE.
THIS IS FROM MEDSCAPE:

"Lactate, citrate, and ascorbate all facilitate GI absorption. "
 
 Well ---isnt that interesting. Nxstage uses LACTATE as its dialysate base. Maybe now we know the real story. The lactate may be aiding in aluminum absorbtion. It is not the aluminum in the dialysate now , it is the lactate causing increased aluminum absorbtion IN THE GUT. That may explain my wifes high number as we have a lot of aluminum in our well and the lactate is cuasing high gut absorbtion.

Sorry Dr. O, but I disagree again. For those going to the Bags which still contains lactate, the aluminum levels fall. It is not GI absorption that is an issue here. It is instead, continued levels of aluminum in the dialysate.

First, it is completely preventable as demonstrated by PiSA since 2006 using Purac products whose lactate for pharmaceutical purposes has only 0,1 ppm or 0.11 mcg/liter. That is before it is diluted in the remaining dialysate fluids.

So, no, this is NOT because of the lactate. It is because NxStage through Rockwell used contaminated lactate products from a company other than Purac. Dr. O, you better than anyone understands this story already.

So, sorry, but I once again strongly disagree with your assessment. It is STILL in the Rockwell products.
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« Reply #18 on: August 30, 2014, 10:42:45 AM »

Dear Maggie and Jeff, not sure I would worry too much about the Zinc which is a trace element needed in the body.

In addition, zinc is a partial treatment for elevated aluminum and helps to lower aluminum levels.

I will look up the criteria on zinc, but I don't believe that is an issue. Chromium can be though.

I look forward to seeing the AAMI results.
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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)

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« Reply #19 on: August 30, 2014, 11:20:27 AM »

Just imagine a world without Zinc:

https://www.youtube.com/watch?v=hPym09LQfnc
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« Reply #20 on: August 30, 2014, 12:18:10 PM »

To everyone here worried about aluminum. Please read this. I have done a large amount of reading -research on this and one aspect keeps coming up,
we are all focused on the BLOOD LEVELS and often just a few points of variation like 13 to 17. YET IT IS CLEAR FROM ALL MY SOURCES THAT BLOOD LEVELS ARE USELESS.  THEY ARE AN UNREALIABLE MEASURE ..

PLEASE READ THIUS FROM MEDSCAPE:

Laboratory Studies


"Generally, findings from an aluminum level blood test are unreliable, as most of the body's stores are bound in bone and tissue and are not reflected in the serum value." 

Most of you are arguing about a few points on a useless test.
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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)

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« Reply #21 on: August 30, 2014, 12:41:58 PM »

How many of you even knew the following_---THIS IS FROM THE MAYO CLINIC.

Cautions
Discusses conditions that may cause diagnostic confusion, including improper specimen collection and handling, inappropriate test selection, and interfering substancesFailure to pay attention to proper specimen collection procedures can cause abnormal results due to specimen contamination, which can lead to misinterpretation and misdiagnosis:

-Special evacuated blood collection tubes are required for aluminum testing.(4) These tubes are readily available (Mayo Medical Laboratories Supply T184) and should always be used.

-Most of the common evacuated blood collection devices have rubber stoppers that are comprised of aluminum-silicate. Simple puncture of the rubber stopper for blood collection is sufficient to contaminate the specimen with aluminum. Typically, blood drawn in standard evacuated blood tubes will be contaminated by 20 to 60 ng/mL aluminum

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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.
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« Reply #22 on: August 30, 2014, 03:37:15 PM »

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« Last Edit: September 18, 2015, 08:19:28 PM by noahvale » Logged
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« Reply #23 on: August 30, 2014, 04:46:51 PM »

To everyone here worried about aluminum. Please read this. I have done a large amount of reading -research on this and one aspect keeps coming up,
we are all focused on the BLOOD LEVELS and often just a few points of variation like 13 to 17. YET IT IS CLEAR FROM ALL MY SOURCES THAT BLOOD LEVELS ARE USELESS.  THEY ARE AN UNREALIABLE MEASURE ..

PLEASE READ THIUS FROM MEDSCAPE:

Laboratory Studies


"Generally, findings from an aluminum level blood test are unreliable, as most of the body's stores are bound in bone and tissue and are not reflected in the serum value." 

Most of you are arguing about a few points on a useless test.

Actually, useless is far from the right term. Is it the MOST reliable? No. But it does correlate with bone deposition levels especially when collected as part of a DFO test.

Trends are NEVER useless. Clinical symptoms are never useless.

I must admit I am greatly puzzled by your zealous defense of a bunch of clowns at NxStage who have done great harm in a real sense to thousands of patients.  They have broken the trust knowingly giving us aluminum for over a year BEFORE the voluntary recall was forced upon them by FMC.

They have COMPLETELY AND FOREVER in my opinion lost the opportunity to regain that trust by continuing to poison thousands of patients with aluminum since the recall.

In addition, there is ample evidence that serum levels also correlate directly with Hb levels and rapidly reverse when treated with aluminum free dialysate. There is no argument whatsoever that they are NOT in compliance with aluminum free dialysate for your wife who by definition is aluminum overload. For that situation, they MUST, by K/DOQI guidelines provide dialysate with <5 mcg/liter. That is not happening.

So, once again, I am greatly puzzled why you are defending these bozos that should have legal action against them, but in all likelihood never will since it is so difficult to "prove" harm in this situation in a legal sense.

If you wish, I would be more than happy to provide studies to back up what I have stated above. Once again, I stand in strong opposition to what you are stating.
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Peter Laird, MD
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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.
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« Reply #24 on: August 30, 2014, 09:15:18 PM »

I should have asked about the results Friday.   Never the less I should get the results Monday.  A hard copy may take longer plus I'll be out of town for a week come Wednesday.

I don't find the zinc to be an issue but chromium and aluminum those I have an issue. 
I'm not sure how I feel about the sulfates. 
Are they afraid Maggie would spoil? :rofl;

« Last Edit: August 30, 2014, 09:16:26 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?

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