I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: obsidianom on August 27, 2014, 12:46:22 PM
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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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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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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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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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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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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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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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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.
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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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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 (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 (http://water.epa.gov/drink/contaminants/index.cfm#List)
Near the bottom of the page.
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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 (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 (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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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 »
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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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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.
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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"
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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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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 (http://ihatedialysis.com/forum/index.php?topic=31141.msg485946#msg485946)
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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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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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Just imagine a world without Zinc:
https://www.youtube.com/watch?v=hPym09LQfnc
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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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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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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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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;
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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
Maybe most everyone (yourself excluded) who kept up with the SAK RECALL thread?
http://ihatedialysis.com/forum/index.php?topic=31141.msg485340#msg485340
http://ihatedialysis.com/forum/index.php?topic=31141.msg485408#msg485408
BD Vacutainer Plus Royal Blue Stopper Plain Blood Collection Tube, product number 368380 (Supply T184 Metal
Free B-D Tube [No Additive]-6 mL) for serum tests EXCEPT ALUMINUM
Covidien Monoject Royal Blue Stopper No Additive Blood Collection Tube, product number 8881307006 (Supply T713
Metal Free Monoject Serum Tube [Aluminum Only]-7 mL) for ALUMINUM serum tests
The above is from the Mayo labs site. It clearly shows a SEPERATE special tube for just ALUMINUM . NOT the regular trace elements tube that is used for all other metals etc. I looked at the tube from Spectra that we use for aluminum and it turns out to be the tube for ALL TRACE ELEMENTS . It is a blue topped tube just like the thread says BUT IS THE WRONG BLUE TOPPED TUBE. There are 2 different blue topped tubes here and Fresenius uses the wrong tube from Spectra. All of us are using the WRONG TUBE>
Spectra uses the B-D TUBE for all tests EXCEPT ALUMINUM instead of the Covidian Monoject Royal Blue Metal Free tube.
Noahvale I did read the thread. I just found NEW information that EVERYONE missed. There is a lot of misinformation here and I am just ding some REAL research to try to clear this up. Dont forget I and I only found out who really caused the Nxstage aluminum problem . I did a lot of digging to crack the case .
I am simply doing the same here.
Facts are better then simple angry opinions. I want the truth. I dont want opinion. Something is wrong here but I dont think it is as simple as everyone thinks.
And Peter< I am NOT defending Nxstage . I just think by latching on to aluminum as being the cause of all these symtoms we could miss the boat . Someimes it takes some real digging to find the truth . If we give in to the easiest asnwer we run the risk of missing the real answer . I just havent been convinced by all I have seen so far that there is STILL an aluminum issue. Yes there WAS one , but it may very well be fixed and there is something else causing symptoms.
Just like Jeff , I want the BEST for my precious wife.
"MUST, by K/DOQI guidelines provide dialysate with <5 mcg/liter. That is not happening." YOUR QUOTE.
WELL ACCORDING TO MY RECENT TEST IT IS HAPPENING. WHAT ELSE DO YOU WANT AS PROOF. I JUST HAD IT TESTED. LESS THEN .005.
http://www.mayomedicallaboratories.com/it-mmfiles/Metals_Analysis_Collection_Transport_final_document.pdf
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I wont reply publically to the last post which was in a way quite a nasty way to attack me. Just because I am not buying the party line that it is all Nxstage doesnt take away my right here to post and be anonymous like everyone else. I expect better from posters. THIS SHOUDNT BE PERSONNAL.
The following is an example of some of the posts that have been a bit out of line in terms of the truth. I only want the truth .
Re: Sak Recall
« Reply #28 on: May 16, 2014, 09:22:11 PM »
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"I am quite disappointed in the NxStage letter implying that the levels of aluminum in patients will only be about
10 with the normal level up to 9."
This is what Nxstage ACTUALLY sent out:
"Specifically increases in patient serum aluminum levels averaging 10μg/L have been reported "
Now read both and see what occurred. Nxstage actually said there would be an INCREASE of 10 points per patient . The poster here misinterpreted it to say there would be a LEVEL of 10. That is a twisting of facts to try and make a point.
Now I am trying here desperatly to get to the truth. My wife has high aluminum. I want to know why. If it is Nxstage then fine. But to be only looking at Nxstage could lead to missing the real culprit or culprits. there could be more then one. Blaming Nxstage now only is like a cop deciding who comminitted a crime based on only a belief and past actions , but not on good investigation of current actions at the time of the crime. By doing that the real criminal may never be found.
I KNOW MY WELL WATER is an issue. My other patient at aluminum of 27 never used Nxstage . So clearly other factors are in play. She also has a well.
If her aluminum is at 27 you can see just how much comtamination can occur WITHOUT ANY CONTACT FROM NXSTAGE.
I want to help my wife and perhaps other patients. Just yelling about Nxstage will not necessarily do that. The truth is what I need to be able to help her. And I intend to find it. If it turns out to be Nxstage then I will be the first to kick their butts.
Lets not get personal here . You can disagree all you want, just be civil.
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Dear Dr. O,
It is quite clear that before NxStage got in bed with the devil, Rockwell, there was NO systemic aluminum issues except in sporadic cases. I have the FMC aluminum study that they sent to all of their FMC providers. Clearly, it is only the patients as a group on the PureFlow that was at risk.
If your tests state <5 mcg/liter, then you are a sporadic case and possibly not tied to the NxStage outbrake.
I have no doubt where my aluminum came from. NxStage. I have no doubt that my aluminum levels went UP after the recall. I have no doubt that my levels went down and my Hb went up when I went back to the bags. No, I don't have precise levels on how high the contamination is at present, but as I stated, a well respected epidemiologist wants to write up a case series because of the data. So, plenty of evidencee that NxStage is STILL poisoning patients with aluminum.
Lastly, we have ALWAYS used the blue top tubes for testing of aluminum. I am a bit surprised your unit apparently did not if this is new information for your unit. That is what I have used for several years of aluminum testing.
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Peter,
I response to your las tline on the above post, I dug up some research from the Mayo clinic that shows we are ALL doing the aluminum wrong at Fresenius. Yes we get the blue tubes BUT htey are the wrong blue tubes . There are 2 types blue topped tubes.
I have one in my hands now . It was given to me for aluminum test . It is the B-D Trace Element # 368380. This is the one Mayo says is NOT to be used for aluminum
See the following from Mayo site I refenced avove.:
BD Vacutainer Plus Royal Blue Stopper Plain Blood Collection Tube, product number 368380 (Supply T184 Metal
Free B-D Tube [No Additive]-6 mL) for serum tests EXCEPT ALUMINUM.
Covidien Monoject Royal Blue Stopper No Additive Blood Collection Tube, product number 8881307006 (Supply T713
Metal Free Monoject Serum Tube [Aluminum Only]-7 mL ) FOR ALUMINUM serum tests
According to Mayo the correct tube is the Covidian Monoject tube # 8881307006
So if you are getting the same tubes we are at Fresenius , that is the WRONG TUBE. Yes it is Blue topped but it is NOT for ALUMINUM. (it is really mainly for lead).
Since I have the tube we use in my hand as I type I know we are using the wrong tube. My guess is ALL FRESENIUS clinics are doing the same.
Mayo claims the wrong blue tube gives a false HIGH READING .
Now with this NEW info please at least give what I am saying some thought. Before we start looking at serum aluminum , we need to at least get the test done correctly.
I think you can beleive the MAYO clinic.
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Just FYI, I too thought it may be FMC sampling related back in Feb. after I read the Mayo specs. I went to our major medical center with a physicians order for a serum aluminum test. The blood was drawn in the blue top BD 368380 which was the same FMC uses. Guess where the hospital sent the sample.....the Mayo Clinic. The results were a level of 28. The order of draw is also important but the testing we did with tiger top first vs blue top first in the order of draw both gave an identical AL levels. Just saying.
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I was convinced it was a sampling issue as well but the in-center FMC patients all had good AL levels. Only us NxStage users had the high AL. Both were using the same blue top trace metal tubes out of the same case. This really has been frustrating.
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My thoughts and observations: Incompetency seems to be on the rise. Whether it be at the grocery store, pharmacy, auto shop or with the customer service dept of a large company, incompetency and bad attitudes seem to be everywhere. Quality control? What quality control??? In my opinion, this reflects either a lack of training, sign of the times, laziness, stress, no emphasis put on accuracy, corrective measures or sense of responsibility. A lack of work ethics. I once left a good job because my employer did not share my work ethics and expected me to help them cut corners and fudge for them. I said no way and left. Financially, I suffered dearly but I do not regret leaving. Something that our delivery courier said the other week stands out in my mind and it makes me think about NxStage and their ethics.
Due to having limited space, we were not ready for the courier to deliver new SAK's for the new S cycler (that we did not know we were getting). He said no problem, that he could store the SAK's until we were ready to have them delivered, which immediately had me picturing the SAK's being stored inside a hot warehouse during a 100 degree heatwave. Again, he said no problem because in order to contract with NxStage, he said his warehouse had to be equipped with a temp-controlled area and added that besides that, he did not want to take the chance of killing people all because he did not store dialysis fluid in a temp-controlled area. That's when I thought about NxStage...
When I think of NxStage, I think about how much work, research and cost must have gone into their medical devices (cyclers, bags, saks, paks, cartridges, pureflow machines, etc...). Makes me wonder why they even went into the dialysis business. Obviously they want to make a profit and be able to offer customers the most leading-edge technology and services. And to do that, they have got to be competitive, accurate and afford to employ the best engineers, tech-support 24/7 to help us survive a situation during treatment and a professional customer service dept. Given Rockwell's history, I do not understand why they chose to do business with them and that troubles me. Not knowing what my husband's "baseline" aluminum level pre-dialysis troubles me. The fact that his center did not want to perform the test troubles me. Everything troubles me. But...given NxStage's history and their own record, I think it speaks for itself. Overall, they seem to share the same work ethics as I expect from myself. In light of this recent aluminum contamination issue, I hope they review their quality control procedures and that of any other entities they do business with and ask themselves if these other entities share the same ethics.
By the way, we are still waiting on the results of my husband's blood aluminum level. Since his center would not test him, his Neph wrote him a prescription to have it tested and we used a lab (not Spectra) independent of his center. They drew two separate blue-topped vials that were different in appearance from each other. If his results reveal a toxic level then of course, we will have more worries and decisions to make. Keeping our fingers crossed...
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I was convinced it was a sampling issue as well but the in-center FMC patients all had good AL levels. Only us NxStage users had the high AL. Both were using the same blue top trace metal tubes out of the same case. This really has been frustrating.
Yes, that is exactly the reason why FMC forced the NxStage recall in the first place. It is ONLY the PureFlow NxStage patients, not those on the bags.
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I have been thinking about this whole mess. I am actually slightly considering going back to the Fresenius Home system if things dont improve. Has anyone else considered this? I hate to do it but I have to do whats best for my wife.
In the meantime I have a plan for us . I am switching to bottled water and Zero water only now. In 2 weeks we will retest the aluminum. If it is still above 20 then I plan to do a week of hanging bags next month just before the next aluminum test . We have to use them up anyway as they are almost out of date and need to be replaced. That will give me a chance to see if the hanging bags really are better. This is the most scientific way I can go about this. Try one variable change at a time and test.
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Was 13 pre-recall; am 10 3 months post-recall. The FMC center I used is testing all SAK users 3 months after getting rid of the problem saks, and routinely does it every January.
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Was 13 pre-recall; am 10 3 months post-recall. The FMC center I used is testing all SAK users 3 months after getting rid of the problem saks, and routinely does it every January.
Well since you are using Pureflow this is another example of it being ok. It appears you have no aluminum issue. I would be very happy with 10.
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Check out my new thread under general Discussion on Drinking Water. Very interesting tests.
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I spoke with the nurse about the AAMI on the hanging bags. The only thing without the less than < symbol was the zinc.
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To me, there is absolutely no doubt that the contaminated SAK's caused my high aluminum levels. I was tested pre-D and my levels were normal. I have had kidney disease with declining function since I was 17 years old (nearly 30 years). My water was tested and was found to have acceptable levels of Al. All of my Al labs were drawn with a special lab tube without the seal that could skew the Al numbers. As my blood Al levels increased, my Hg decreased and vice versa. I agree that other factors, such as contaminated well water could make the Al numbers higher, but that doesn't change the fact that the SAKs added to that amount. There seem to be more than enough people whose Al numbers climbed using NxStage SAKs to prove a correlation between the SAKs and elevated Al. I am not seeking any monetary compensation from NxStage. I want them to acknowledge and correct the problem, and I don't have complete confidence that they have done that. I am blessed enough to be free from D for now. I am thankful that I don't have to continue to use a product that I feel could be unsafe. No one should have to do that.
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So true Angie. There is no doubt that they still have levels of aluminum that is too high. As long as the bags work, we will work with NxStage for now.
It is not likely anyone will obtain compensation from NxStage given the difficulty in proving "harm" in a legal sense. I have no doubt that they have harmed us, but the lawyers are looking at it in a different light.
It will need to be a political and cultural movement. Even that shall be difficult to accomplish but we shall push on.
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WE are switching to bags this weekend. I have an order of 75 boxes coming for all the bags for a month. Not happy about it but worht trying as my wifes aluminum is still up. Its weird because everyone else in our area has aluminum dropping back to normal on Nxstage with the Pureflow. For some reason my wife is still way up. So I decided to try the bags for a month and see what happens.
I was able to hang 5 bags on the holder and 1 Bag on the warmer . It is cumbersome but works.
We will see.
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Interesting article on in center aluminum levels in another country. Notice the range in dialysis patients vs. non renal patients. The levels are much higher in the dialysis patients . As high as 49.2. Now my wife is at 41 which is within their range . So it will be interesting to see if her aluminum drops on the bags .
It may be also that we should expect higher aluminum levels in all dialysis patients simply because they cant excrete it and dialysis is not able to remove all of it. The whole issue is a concern and should be studied much more .
Aluminium in chronic renal replacement therapy patients undergoing haemodialysis in two renal units in Bogotá].
[Article in Spanish]
Cárdenas O1, Segura O, Puentes W, Sanabria M, Nava G, Torrenegra R.
OBJECTIVE:
Determining aluminium concentrations in the serum of patients undergoing chronic renal replacement therapy with haemodialysis and concentration in distribution network water and dialysis in two renal units in Bogotá.
MATERIAL AND METHODS:
This was a descriptive study of 63 haemodialysed patients and 20 healthy subjects. Aluminium concentration was determined in water and serum using graphite furnace atomic absorption spectrometry with deuterium lamp background corrector.
RESULTS:
Average aluminium concentration was 26.5 µg/L in patients (ranging from 11.2 to 49.2 µg/L; 8.03 standard deviation) and 8.05 µg/L in healthy individuals (ranging from undetectable to 17.2 µg/L; 4.31 standard deviation). Aluminium concentration in dialysis water and distribution network water was below 2 µg/L and 200 µg/L, respectively.
CONCLUSIONS:
Aluminium concentration in water and serum in this study was below international standard values, thereby indicating appropriate treatment. Additionally, aluminium concentration in pre-HD and post-HD sera was below that reported previously. Aluminium hydroxide uptake increases aluminium concentration in serum. Personal situation regarding age, gender, civil and work status were not risk factors determining aluminium concentrations in serum.
PMID: 21340131 [PubMed - indexed for MEDLINE] Free full text
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Actually, there are some very well done studies, most not in the US for some unknown reason, sigh. Here is one that is VERY important. It shows that dialysate with more than 3 mcg/liter results in accumulation of aluminum in the tissues. This article written in 1998 has largely been ignored and certainly ignored by the K/DOQI guideline committees dealing with these issues.
http://ndt.oxfordjournals.org/content/13/suppl_3/78.full.pdf
When the dialysate has 3 mcg/liter or less, then aluminum levels fall in dialysis patients. The interesting aspect of this article is how dialysate levels correlated with serum levels in the patient
Once again, there is no safe level of aluminum for dialysis patients.
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WE are switching to bags this weekend. I have an order of 75 boxes coming for all the bags for a month. Not happy about it but worht trying as my wifes aluminum is still up. Its weird because everyone else in our area has aluminum dropping back to normal on Nxstage with the Pureflow. For some reason my wife is still way up. So I decided to try the bags for a month and see what happens.
I was able to hang 5 bags on the holder and 1 Bag on the warmer . It is cumbersome but works.
We will see.
Hope you guys see her aluminum level come down. Hanging bags are no fun but no matter the modality, I don't think any part of dialysis is easy on anyone. But doing the right thing is. Good luck, please keep us posted.
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Actually, there are some very well done studies, most not in the US for some unknown reason, sigh. Here is one that is VERY important. It shows that dialysate with more than 3 mcg/liter results in accumulation of aluminum in the tissues. This article written in 1998 has largely been ignored and certainly ignored by the K/DOQI guideline committees dealing with these issues.
http://ndt.oxfordjournals.org/content/13/suppl_3/78.full.pdf
When the dialysate has 3 mcg/liter or less, then aluminum levels fall in dialysis patients. The interesting aspect of this article is how dialysate levels correlated with serum levels in the patient
Once again, there is no safe level of aluminum for dialysis patients.
Hemodoc: Thanks for providing that report. And I agree, there is no safe level of aluminum. Seems it can build up quicker in some patients, slower for others but either way, it does pose a threat and it's scary to think about.
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On another note as I watch the bags hanging today, the cleaning kit worked wonders. I ran it through as directed yesterday(quite easy) and today the drain line no longer smells bad. Thats a nice surprise. They should have done this sooner. Its going to be every 3 months now.
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On another note as I watch the bags hanging today, the cleaning kit worked wonders. I ran it through as directed yesterday(quite easy) and today the drain line no longer smells bad. Thats a nice surprise. They should have done this sooner. Its going to be every 3 months now.
We use the disposable drain lines. The only thing I drained through the black line was the unused dialysate.
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I probably missed it, but why was the Al in the dialysate again? Couldn't it be filtered out?
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I probably missed it, but why was the Al in the dialysate again? Couldn't it be filtered out?
It shouldnt have occurred. Suffice it to say it was due to the lactate in the dialysate that is the main ingredient. The company that was subcontracted to produce the lactate for Rockwell had "issues'. Nxstage had contracted with Rockwell to manufacture the dialysate sak concentrate and Rockwell subcontrcacted to another company to make the lactate base.
The question now is, where does it stand? Is there aluminum still in the saks? For now we are using bags until we test the aluminum in my wife.
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And we CAN'T sue? Not even in the US of A?
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And we CAN'T sue? Not even in the US of A?
Lawsiuts are difficult to win. You must prove there was action on their part that caused damages. Just a mistake like having too much aluminum isnt enough. In court you must prove the "mistake " or action dierctly caused some type damage that can be quantified.
Yes Nxstage is responsible for the aluminum issue , they admiteed it. But the problem will be proving actual damages.
All I care is that they clean this up and IT NEVER HAPPENS AGAIN. The problem now is we dont know for sure they have actaully cleaned it up. My wifes aluminum has bee elevated severly for months on the pureflow. If it drops significantly on the bags it tends to show there is still a problem with the pureflow. We should have a number next Tuesday on her aluminum. I will post it.
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The problem IS with the PureFlow products made by Rockwell.
No, winning a lawsuit will likely be impossible. Our only choice is at the marketplace level when another machine is available. The Baxter Vivia is already in use in Europe and hopefully soon here in the US. I have no doubt that aluminum levels will be one of the advertising issues with Baxter against NxStage. NxStage is truly setting themselves up for failure. I have lost all trust with them and they won't get it back.
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We had no idea there was an aluminum issue going on. Well we knew because my wifes nurse called and had us check some lot numbers and also had her do an aluminum test and everything came back fine. Her sak number is 306. Seems to be an oddball sak that not many people use. 450/39/25L is her setup.
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We had no idea there was an aluminum issue going on. Well we knew because my wifes nurse called and had us check some lot numbers and also had her do an aluminum test and everything came back fine. Her sak number is 306. Seems to be an oddball sak that not many people use. 450/39/25L is her setup.
Sak 306 is simply a 50 liter sak with a potassium of 2 rather than 1. WE use a similar sak, 304 which is 60 liters at potassium of 2.
If you are running your blood at 450 you are going very fast and risking your fistula . Dr. Agar has written on this extensively and recommends staying below 350. WE do 340.
On Nxstage there is really no advantage to faster blood speeds. It is all about the volume of dialysate. 25 liters is low amount. My wife for example is tiny and weighs only 55 kg uses 30 liters. You may want to talk to your team about this.
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We had no idea there was an aluminum issue going on. Well we knew because my wifes nurse called and had us check some lot numbers and also had her do an aluminum test and everything came back fine. Her sak number is 306. Seems to be an oddball sak that not many people use. 450/39/25L is her setup.
Sak 306 is simply a 50 liter sak with a potassium of 2 rather than 1. WE use a similar sak, 304 which is 60 liters at potassium of 2.
If you are running your blood at 450 you are going very fast and risking your fistula . Dr. Agar has written on this extensively and recommends staying below 350. WE do 340.
On Nxstage there is really no advantage to faster blood speeds. It is all about the volume of dialysate. 25 liters is low amount. My wife for example is tiny and weighs only 55 kg uses 30 liters. You may want to talk to your team about this.
She has been doing it for 2 years now without issue. Her pressures stay under 200 and her kpv (is that what it is called I forget?) stays around 2.0 to 2.4 and now that they allow urine into the formula her kpv is up in the 3.X range each month. If she does treatments any longer than 2 and a half hours it makes her very sick. Since her kidneys still function to some degree her neph agrees with her 4 day a week short treatments. She feels good and functions as if she is not sick at all. It took them months to finally agree with her at davita that she is very different than a typical dialysis patient. I will have her question them next month about the flow rate but I know she wont change it because on the rare occasion when her numbers are a bit high and we are forced to run at a lower rate it makes her feel terrible after the treatment. Her monthly in center visit was today actually. I don't know my wife's weight but she is heavy set and my guess would be around 230 pounds. She doesn't weigh herself for treatments because she doesn't retain fluid.
I had her question them today about the aluminum. Nancy (epomans former nurse) told her nobody in this region had any aluminum issues. She said it was a regional thing and my wife's blood work showed no aluminum when we tested it a month or two ago.
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She has been doing it for 2 years now without issue. Her pressures stay under 200 and her kpv (is that what it is called I forget?) stays around 2.0 to 2.4 and now that they allow urine into the formula her kpv is up in the 3.X range each month. If she does treatments any longer than 2 and a half hours it makes her very sick. Since her kidneys still function to some degree her neph agrees with her 4 day a week short treatments. She feels good and functions as if she is not sick at all. It took them months to finally agree with her at davita that she is very different than a typical dialysis patient. I will have her question them next month about the flow rate but I know she wont change it because on the rare occasion when her numbers are a bit high and we are forced to run at a lower rate it makes her feel terrible after the treatment. Her monthly in center visit was today actually. I don't know my wife's weight but she is heavy set and my guess would be around 230 pounds. She doesn't weigh herself for treatments because she doesn't retain fluid.
I had her question them today about the aluminum. Nancy (epomans former nurse) told her nobody in this region had any aluminum issues. She said it was a regional thing and my wife's blood work showed no aluminum when we tested it a month or two ago.
Basically, I also agree with the philosophy - If it ain't broke, don't fix it - especially in your wife's situation since she still urinates and has some residual clearance function. However just a couple of thoughts for you.
The "Dr. Agar" obsidianom is referring to is John Agar, MD, a world renown nephrologist from Australia who has dedicated his practice to helping esrd patients live well with renal failure. He is an unabashed proponent of home hemo and the concept of HDP - Hemodialysis Product - in determining dialysis adequacy.
"kpv" is Kt/V. It uses kinetic modeling to come up with a dialysis prescription based on urea clearance from the blood. While accepted by the majority of nephrologists - especially those in the U.S. - as the "gold standard" of dialysis adequacy, it is far from it. Urea is an easily dialyzable toxin. However, better indicators for long-term patient survivability with less dialysis related medical complications, is the clearance of β2 microglobulin and phosphorous. General rule of thumb is a minimum of 18 hours of hemodialysis per week to accomplish this goal.
If interested, here is a link on the concept written by Dr. Agar....
http://www.nocturnaldialysis.org/opthd1.htm - (also gives a good explanation of Kt/V and why this isn't a good indicator of optimal dialysis)
and one on HDP and dialysis adequacy from Belding Scribner, MD and Dimitrios Oreopoulos, MD - two of the "fathers of dialysis" -
http://therenalnetwork.org/qi/resources/HDP.pdf
Again, obsidianom is pretty much on target about the damage high blood pump speeds can cause to a fistula. You can read more here - http://www.homedialysis.org/news-and-research/blog/38-dont-flog-fistulas-slow-hemodialysis-blood-flow
Final thought...Please have your wife's dialysis center give her a copy of the aluminum results just so you can see that it is "0." If you have been keeping up with the IHD discussion threads on this topic, nxstage users from all across the country were/are having problems with the PureFlow SAKS.
May you both continue to do well! - NoahVale
Wow thank you so much for this information it is very much appreciated! I will read further into the links you posted and also show my wife when she gets back from Cali friday and have her read up on everything so we can make better informed decisions. I do know she feels very good and works 40 to 60 hours a week the way we have been doing it the last 2 years. That is why I am sure she would be hesitant to change anything. We hope that she will have a transplant in the next year as soon as she looses the rest of the weight. Her sister, myself and 5 or 6 of her friends are all going to be tested. Hopkins told us out of that many somebody will likely be a good match. Most likely her sister but we are all ready whoever it happens to be.
Oh BTW we have a baby due December 22nd! Had to use an egg donor and surrogate. None of the fertility clinics would do the procedure to retrieve her eggs.
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Wow thank you so much for this information it is very much appreciated! I will read further into the links you posted and also show my wife when she gets back from Cali friday and have her read up on everything so we can make better informed decisions. I do know she feels very good and works 40 to 60 hours a week the way we have been doing it the last 2 years. That is why I am sure she would be hesitant to change anything. We hope that she will have a transplant in the next year as soon as she looses the rest of the weight. Her sister, myself and 5 or 6 of her friends are all going to be tested. Hopkins told us out of that many somebody will likely be a good match. Most likely her sister but we are all ready whoever it happens to be.
Oh BTW we have a baby due December 22nd! Had to use an egg donor and surrogate. None of the fertility clinics would do the procedure to retrieve her eggs.
Your wife is definitely not the average esrd patient. Pregnant women on dialysis are required to get treatment at least 6 days a week. After reading the additional info about the pregnancy (congratulations!) and continuing to work 40-60 hours a week, I went back to check your introduction post. I now have a better understanding. So basically, the sarcoidosis caused limited kidney dysfunction? Could also explain why her aluminum blood level shows 0, her kidneys are still filtering it out. About your wife's weight - isn't about 25-35 pounds due to her pregnancy? Shouldn't she be close to the target for transplant after delivery and recuperation time? Is she being followed at Johns Hopkins for her pregnancy? Continue to check in over here. You never know what you'll learn.
Congrats again. - NoahVale
We had to use an egg donor and surrogate. We wanted to use her eggs but none of the fertility clinics would retrieve them. They said once she gets a transplant then they will retrieve them. Problem is my wife turns 41 in november so time is running out to use her own eggs. Her kidney function is about 8 to 10%. We had thought about trying to get pregnant but she decided against it. I was ready to help her do as many treatments as needed but she didn't want to risk it.
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Is it really time to end the aluminum crises? Well, yes of course, NxStage needs to do so quickly. However, a post today on FB on the NxStageUsers forum underscores that the "crises" continues unabated at the present time. Sure, I have heard from more than one source the rumors of a new provider for the SAKs, but hearing someing with an increasing aluminum content and wondering if they have old SAKs from the recall should have all of us looking at the fact NxStage is STILL POISONING their patients with aluminum. No, it is not over yet.
Tami Ramsey
11 hrs · Canton, GA
So, after getting my labs back this month and noticing that I was anemic...I'm usually between 10-11, even at 12 once this summer, I requested an aluminum level.
Last quarter my aluminum level was 16.3 and because my hgb was doing well, I didn't really worry about the aluminum. Today, it's 48.6! My Hgb for October was 9.4, prompting an Aranesp dose increase to 100mg.
What the heck is going on? Am I using Sak's that were recalled? Does anyone have the list still available so that I can double check? I've asked my clinic to talk with my nephrologist and see if I should switch to bags. What are your thoughts?
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Is it really time to end the aluminum crises? Well, yes of course, NxStage needs to do so quickly. However, a post today on FB on the NxStageUsers forum underscores that the "crises" continues unabated at the present time. Sure, I have heard from more than one source the rumors of a new provider for the SAKs, but hearing someing with an increasing aluminum content and wondering if they have old SAKs from the recall should have all of us looking at the fact NxStage is STILL POISONING their patients with aluminum. No, it is not over yet.
Tami Ramsey
11 hrs · Canton, GA
So, after getting my labs back this month and noticing that I was anemic...I'm usually between 10-11, even at 12 once this summer, I requested an aluminum level.
Last quarter my aluminum level was 16.3 and because my hgb was doing well, I didn't really worry about the aluminum. Today, it's 48.6! My Hgb for October was 9.4, prompting an Aranesp dose increase to 100mg.
What the heck is going on? Am I using Sak's that were recalled? Does anyone have the list still available so that I can double check? I've asked my clinic to talk with my nephrologist and see if I should switch to bags. What are your thoughts?
You are correct Peter, Nxstage really screwed up and never completely fixed the problem like they promised. My wife is still on bags and her aluminum mwhich was stuck at 40 plus is dropping fast finally. They basically admitted that it is JUST NOW that they are fixing this. This is 5 months later then they originally stated. I have some very damning info from them that I cant repeat that convinced me they never fixed the original problem back in May. They are only now doing it .
Some people are ok on the pureflow and my guess is that has to do more with their own ability to excrete aluminum . People like my wife who cant excrete it on thier own were really poisoned. I am glad the bags work so well.
I wish the FB people would come over here and post .We could use them . I dont do facebook.
EDITED: Fixed quote - Rerun, Admin
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Dear Dr O,
I believe that there is a much simpler explanantion on why some have no elevations, well, explanantions is more like it.
First, many nephrologists erroneously consider levels as high as 20 "normal." I suspect that is a large part of the equation.
Secondly, PiSA still makes product for NxStage and it is likely that many get their supplies through PiSA. One noted he had shipping labels from PiSA on at least one of his shipments.
Clearance of aluminum is dependent on renal function. It is likely that those who are anephric had the highest levels and those with higher levels of residual renal function ha better levels. Mine were in the 14-17 range except for one month when it hit 21 and that was when I was pushing my volumes up to 47 liters instead of my usual 40 liters. Even with these "low" levels, my Hb and my cognitive abilities took a hit for sure.
At this point, I trust nothing that NxStage states.
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Dear Dr O,
I believe that there is a much simpler explanantion on why some have no elevations, well, explanantions is more like it.
First, many nephrologists erroneously consider levels as high as 20 "normal." I suspect that is a large part of the equation.
Secondly, PiSA still makes product for NxStage and it is likely that many get their supplies through PiSA. One noted he had shipping labels from PiSA on at least one of his shipments.
Clearance of aluminum is dependent on renal function. It is likely that those who are anephric had the highest levels and those with higher levels of residual renal function ha better levels. Mine were in the 14-17 range except for one month when it hit 21 and that was when I was pushing my volumes up to 47 liters instead of my usual 40 liters. Even with these "low" levels, my Hb and my cognitive abilities took a hit for sure.
At this point, I trust nothing that NxStage states.
What is interesting is my wife still has urination function . Yet she hit 44 on the serum aluminum. So it may be more complex then we think.
My guess based on physiology is the aluminum goes into bone as we know and there is where the real issue lies. I would guess that people with higher bone turnover or in effect more metabolically active bone may end up with higher serum aluminum levels and more difficulty excreting the aluminum then people with less bone activity . My wife has a fairly high alkaline phosphatase level, above normal which indicates high bone activity. Perhaps that is why her aluminum skyrocketed to 44. This is all conjecture.
In the end it is still all due to Nxstage having too much aluminum in th saks . Period. For now we are staying on the bags. I am mused to it now and dont mind it much now. The cardboard is actually heating our house as we burn wood for heat and cardboard burns well . I am saving on fuel costs and electricity as I dont have to heat 60 liter saks any longer.
By the way my apple trees produced over 400 pounds of quality apples this year . The dialysate as fertilizer is working wonders on my small orchard. I donated apples to the local food bank(100 pounds) as I was over run with apples. So I am using dialysis for heat and food. My wife thinks she should get paid for having renal disease as we are saving money with the end products.
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I cannot excrete aluminum as I do not pass any urine. My levels have been normal. As Obsidionom states it may have to do with bone metabolism, but maybe the explanation is that some have a better binding capacity with bome than others, which I am sure isn't good for the bones, so maybe we are also being harmed without knowing it. Certainly, my cognitive function has gone down in the last year, and getting my Hgb. To rise has been problematic over the same period of time. Wonder what your thoughts are about this, Peter?
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I cannot excrete aluminum as I do not pass any urine. My levels have been normal. As Obsidionom states it may have to do with bone metabolism, but maybe the explanation is that some have a better binding capacity with bome than others, which I am sure isn't good for the bones, so maybe we are also being harmed without knowing it. Certainly, my cognitive function has gone down in the last year, and getting my Hgb. To rise has been problematic over the same period of time. Wonder what your thoughts are about this, Peter?
My question is, what exactly is your aluminum? "Normal" is in the eyes of the beholder. In reality as Peter has written, it should be below 5 .
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Amanda, I believe the simplest explanation is that you are getting product from PiSA which still makes SAKs and the bags. Mark Wetzel found a PiSA routing note on some of his SAKs at one point in time a couple of months ago. NxStage has a very long term contract with PiSA and is quite happy with what they produce. So am I.
Rockwell on the other hand is a horrible company in my opinion. Unfortunately, they produce a large share of dialysaate for DaVita and with their Triferric nearing FDA approval, will likely gain an even larger share. I will pass on both Triferric and in-center dialysis.
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Update....my wife's aluminum on Oct. 7 was 9 and on Nov. 5th it was 8. This is after being in the mid 20's for most of the last year and a half. Still hanging 2 bags per 30L treatment. Will go back to all Pureflow when level is 0 or less than 5. Just FYI.
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Well now I am confused. My wifes aluminum went UP on bags this past month to 27 from 22. We are all confused. Any ideas? She gets no aluminum in water or diet.
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Well now I am confused. My wifes aluminum went UP on bags this past month to 27 from 22. We are all confused. Any ideas? She gets no aluminum in water or diet.
Two issues possible.
1) Simply mobilization of aluminum contained in other tissues. Serum levels are not an accurate reflection of diffuse organ contamination.
2) NxStage is now using a different supplier as well for the Bags.
That is if all other sources have been eliminated. I would think the most likely is mobilization from other tissues. It takes about a year to clear aluminum from the bones. In addition, lab variation that can depend on collection issues, transportation issues are also something to consider.
I do know that NxStage has a long term contract with PiSA until I believe 2018. I would be very surprised to see PiSA relax their standards.
Wait to see what the trends are or how they continue. I suspect it will over time continue to come down. Hopefully that will be the case.
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Well now I am confused. My wifes aluminum went UP on bags this past month to 27 from 22. We are all confused. Any ideas? She gets no aluminum in water or diet.
Two issues possible.
1) Simply mobilization of aluminum contained in other tissues. Serum levels are not an accurate reflection of diffuse organ contamination.
2) NxStage is now using a different supplier as well for the Bags.
That is if all other sources have been eliminated. I would think the most likely is mobilization from other tissues. It takes about a year to clear aluminum from the bones. In addition, lab variation that can depend on collection issues, transportation issues are also something to consider.
I do know that NxStage has a long term contract with PiSA until I believe 2018. I would be very surprised to see PiSA relax their standards.
Wait to see what the trends are or how they continue. I suspect it will over time continue to come down. Hopefully that will be the case.
Thanks Peter. I kind of thought the same thing , that it might be leaching out of the bones into the blood. We did eliminate ALL other sources of aluminum. All water is Zero water and she doesnt eat as she is on a feeding tube. We only use the bags now for 6 weeks already. We are continuing only on bags. Hopefully it will drop over time. It just makes me more angry at Nxstage for this. They really poisoned her.
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Also agree. We spent several months in the teens (down from mid 20's) before the sub 10 numbers. Remember also we went back in-center on 2 separate 4 week periods trying to remove the aluminum and never got it below 12. It's tough to eliminate.
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The Fresenius clinic I use does an AL level check one a year, with the January monthly labs.
I'm on NxStage and haven't done a run with bags in months (currently using SAK 307) My AL just came in at 5.
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Maggie's AL went up to 10 over a year before the recall then spiked at 18 after the recall.
Maggie switched to hanging bags when the recall started.
Her aluminum was 9 last month and 8 this month.
We are still using hanging bags.
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Sadly, after nearly a year of telling us after the recall, everything is fine, six months after telling the units that they have a new sodium lactate supplier, it still goes on Judah. (Ben Hur fans understand)
I went for my monthly visit today. I have been on the bags since July.mmy latest level is less than5. However, other patients seen in our unit and one with some of the same nurses have levels of 5-10. NxStage claims its is over, but it isn't. They still have low level poisoning. Stay away from the PureFlow. Even low levels of aluminim have chronic effects,
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Sadly, after nearly a year of telling us after the recall, everything is fine, six months after telling the units that they have a new sodium lactate supplier, it still goes on Judah. (Ben Hur fans understand)
I went for my monthly visit today. I have been on the bags since July.mmy latest level is less than5. However, other patients seen in our unit and one with some of the same nurses have levels of 5-10. NxStage claims its is over, but it isn't. They still have low level poisoning. Stay away from the PureFlow. Even low levels of aluminim have chronic effects,
We are still using the bags. My wifes aluminum dropped to 22 on the bags so far form 44. Unfortunatly with her fistula damaged for 2 months it didn't drop a lot recently. Now hopefully with the repaired fistula it should drop more.
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Our number last week was 7 down from the 8-12 level the last 2 months. We're using all pureflow. Our neph says below 10 is ok. I'm not convinced.
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If it was the neph on dialysis, below 10 would not be their level that they would accept. The data is that there is no safe level of aluminum. I will post a study showing that a level of 0.85 mcg/liter resulted in significant Hb drops. This is lower than the current levels allegedly in the current PUreFlow.
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http://www.degruyter.com/view/j/cclm.2000.38.issue-3/cclm.2000.032/cclm.2000.032.xml
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Still using hanging bags and this month labs say Maggie's aluminum is 5.
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Our number last week was 9......still stuck in the 7 to 10 range. Using all pureflow. I think Hemodoc is right that it takes a long time to remove from body assuming all external sources are eliminated.
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Our number last week was 9......still stuck in the 7 to 10 range. Using all pureflow. I think Hemodoc is right that it takes a long time to remove from body assuming all external sources are eliminated.
All,the people on PureFlow at my clinic are at 5-10. I stopped and went on bags last July. My last aluminum was undetectable, well less than 5.
You will never get back to your baseline as long as you are on the PureFlow. It goes on and is not over.
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Our number last week was 9......still stuck in the 7 to 10 range. Using all pureflow. I think Hemodoc is right that it takes a long time to remove from body assuming all external sources are eliminated.
All,the people on PureFlow at my clinic are at 5-10. I stopped and went on bags last July. My last aluminum was undetectable, well less than 5.
You will never get back to your baseline as long as you are on the PureFlow. It goes on and is not over.
Peter, ANY ADVICE????? We have been on bags for 4 months at least and the latest aluminum last week was 24. It is stuck at 22 to 26 each month. All other numbers are great including hemoglobin at 11.0. The fistula is working great now . We are only using Zero Water . There is no other source of aluminum.
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Our number last week was 9......still stuck in the 7 to 10 range. Using all pureflow. I think Hemodoc is right that it takes a long time to remove from body assuming all external sources are eliminated.
All,the people on PureFlow at my clinic are at 5-10. I stopped and went on bags last July. My last aluminum was undetectable, well less than 5.
You will never get back to your baseline as long as you are on the PureFlow. It goes on and is not over.
Peter, ANY ADVICE????? We have been on bags for 4 months at least and the latest aluminum last week was 24. It is stuck at 22 to 26 each month. All other numbers are great including hemoglobin at 11.0. The fistula is working great now . We are only using Zero Water . There is no other source of aluminum.
You may consider seeing a toxicologist if it persists. Bone biopsy is the best aluminum test, but who wants to do that. Her serum levels may simply be a reflection of the continued mobilization of bone deposition. Studies show it takes about a year to clear the bone stores.
I remever you stated a while back that your well water is high in aluminum. Reverse osmosis and distillation is the best method of removing aluminum. I can't find data on carbon filters for aluminum. Actually one site mentioned that as well.
http://www.purewateroccasional.net/wtialuminum.html
If there are no other sources, the stores of aluminum in the bones will eventually mobilize. I have a certain amount of residual renal function which most likely helped me clear my low levels of aluminum.
Deferoxamine therapy according to Scott Rasgon, MD is a treatment worse than the disease. It is associated with Staph sepsis and fatal Mucormycosis. At the levels most are reporting, I can't imagine the risk benefit of DFO would favor going ahead with that treatment.
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Thanks Peter and Noahvale. We will continue to moniter closely.
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It took almost a year for Maggie to drop to 5. If you recall we switch to hanging bags right off. We had already cut other sources of aluminum. And Maggie's was never that high.
I even used the used paks to filter the well water. Due to the new packaging of the paks back then we ended up with lots of new paks just before we stopped using paks and switched to hanging bags. I'm still using paks to filter all the ice Maggie eats. :shy;
We just switched to nocturnal 8 hours over night.
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For the first time since the aluminum crises began our number taken this week was <5 which is exactly what it was in Jan. 2013. I don't think Spectra labs can detect or report levels less than that. We've been using Saks only for about 4-5 months with an average range of 8-12 (down from a high of 28). The Saks (302) used for this 5 week period have expiration dates of 11-2016. Don't know when they were manufactured. Just maybe the contaminated Saks have cleared the system after 2 freaking years.
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I have been on bags since last July. After 4 months, aluminum was less than 5. However, this month, it is now at 7.
What I have feared for quite some time is that NxStage might go to the same sodium lactate producer as they use for the SAKs. I will have the clinic follow my aluminum levels for the next three months. If it continues to rise or fail to go below 5', then I will be done forever with NxStage.
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I have been on bags since last July. After 4 months, aluminum was less than 5. However, this month, it is now at 7.
What I have feared for quite some time is that NxStage might go to the same sodium lactate producer as they use for the SAKs. I will have the clinic follow my aluminum levels for the next three months. If it continues to rise or fail to go below 5', then I will be done forever with NxStage.
I almost dread the next time my husband has his aluminum level tested. Life is tough enough as is it. We should not have to dread a dialysis product or device or, for that matter, anything that is suppose to be helping him.
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My aluminum last month was 7 after being undectable for several months on the bags. This month my aluminum level is now 8. My phosphorus is now much higher than normal which happened the last time NxStage poisoned me with aluminum. I am done with NxStage. I will be switching to the baby K as soon as possible. I have some choice words for this company which I am biting my tongue to contain. There is no acceptable level of aluminum and there is NO reason for any significant levels of aluminum with Purac able to supply sodium lactate for I fusion at less than 0.11 mcg/ liter. Obviously, NxStage is using a different provider for sodium lactate in both the bags and the SAKs. There is now no reason to try and avoid aluminum by using the bags. It is time to DUMP this horrible company making business decision to poison all of their patients with aluminum poisoning. Unbelievable!!
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Yeah, I reported <5 in March and our April # was 8.....on SAKs.
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Please ask your clinic let you take an AAMI on the dialysate.
Include the lot # with the test and if there is aluminum present ask your doctor to contact nxstage.
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Well it's back
.007 instead of <.005
ref205 lot# Q1603845
(http://jtpotteryusa.com/dghdjfd.png)
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Well it's back
.07 instead of <.05
Is the safe limit considered .05 or .005?
The analysis you show lists aluminum of .007, not .07
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Thanks I corrected my post.
Safe level?
Is there one?
Less than .005 is preferred.
Anyway we are testing Maggie Aluminum level to see if it has come up as well.
Last time Maggie's Rheumatoid Arthritis flared up.
And she is just starting to have those symptoms again.
Not saying they are linked just observing a possible correlation.