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.
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.
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.
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.
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.
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.
I would like to respectfully weigh in:Quote from: obsidianom on August 29, 2014, 03:10:47 AMMaggie, 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 <.005I 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 Quote from: Hemodoc on August 29, 2014, 06:29:42 AMAnd 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.Quote from: obsidianom on August 29, 2014, 03:10:47 AMPeter, 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 saidQuote from: obsidianom on August 27, 2014, 12:46:22 PMI 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/fluidsList of National Secondary Drinking Water RegulationsContaminant Secondary StandardAluminum 0.05 to 0.2 mg/Lhttp://water.epa.gov/drink/contaminants/index.cfm#ListNear the bottom of the page.
Quote from: obsidianom on August 30, 2014, 05:36:14 AMNow 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.
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.
I posted 2 separate SAK lot # tests Both showed .005I posted 1 Hanging bag test it showed Less Than (Or as I was corrected earlier)<.005I 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 & .005Chromium @ .006 & .007 Copper @ .007Zinc @ .005sulfate @ 1.4 & 1.3The hanging bags had this elevated:Zinc .045We have a AAMI out to the lab on our hanging bags so I'll have those results soon.
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.
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.