Further investigation of elevated aluminum levels

[Speedy1wrc]

So, since NxStage is not doing anything to help patients affected by the contaminated SAK's, my center and I are. We were some of the first patients affected at the very beginning and did report the contaminated SAK's to them a year ago. To quote my nurse, she said, "I was freaking out with them". To date we still have yet to get any tangible explanation of what happened or what is being done to remedy the situation. Multiple attempts to get answers from them hasn't been successful.

Locally we have 4 people on the Pureflow. We'll exclude one for now since thy are still in training. As of our June aluminum test other than me, everyone's aluminum is the same. No improvement whatsoever. Mine is still high but came down 3 points. I honestly don't know if that is statistically significant or not. So why are our levels still so high?

We have started a study to see for ourselves if the contaminated SAK's have been corrected. The one patient who is new has had a baseline aluminum taken. In a month another test will be done and the results evaluated. If the SAK's are OK the level should have not risen.

Two patients will remain on SAK's. Their levels are elevated and after a month will be evaluated again. I am going on bags, and again will be tested at the end of the month. If my level comes down then it would appear the SAK's are still bad. If the data is inconclusive after a month, we will continue for a second or third month as necessary.

Ultimately we hope to have clear data one way or another as to whether the SAK catastrophe has been resolved.

There are a lot of angry people and since NxStage has dropped the ball, we decided to do something about it.

I will keep everyone updated on how things are going. In the meanwhile, NxStage take this opportunity to step up to the plate.

[Hemodoc]

If NxStage does not to back to the levels they had prior to this, they will be finished as a home dialysis company. Wow, not good news. Thank you for the update. I hope that they are not really the stupid. that would be sad indeed.  Thank you again.  Peter.

[Speedy1wrc]

It's after hours so my post on the NxStage user's group is alive and kicking. I would not be surprised if it disappears by 9 am or so tomorrow.

Since posting it more and more patients are coming out of the woodwork. It's getting a lot of likes, and maybe it's the nudge this problem needed to get it rolling again.

We will see!

[obsidianom]

We are working on doing an aluminum test on the dialysate aluminum from the pureflow. That seems to be the best way to see what is in the final product now.

[Speedy1wrc]

Excellent! We are bound for the moment by what DaVita will let us do. In the books it just looks like I am switching to bags. The data we collect from this change can be used to evaluate good vs. bad, hopefully. DaVitas edict is that they aren't going to do anything unless the a!uminum level is over 40. However others have reports levels higher than that and no action is being taken.

[obsidianom]

Excellent! We are bound for the moment by what DaVita will let us do. In the books it just looks like I am switching to bags. The data we collect from this change can be used to evaluate good vs. bad, hopefully. DaVitas edict is that they aren't going to do anything unless the a!uminum level is over 40. However others have reports levels higher than that and no action is being taken.

My wifes aluminum is 44

[Speedy1wrc]

Wow, no wonder she has issues. Are you with DaVita?

[obsidianom]

We are fresenius

[Speedy1wrc]

Ok, DaVita's threshold is 40. What is FMC's?

[Hemodoc]

Ok, DaVita's threshold is 40. What is FMC's?

The threshold for aluminum is an issue of when to consider chelation therapy, NOT a threshold for complication of high aluminum. My levels are not that high, but my Hb is the lowest it has ever been. Not good.

[obsidianom]

Ok, DaVita's threshold is 40. What is FMC's?

our nephro has 50 as the cut off for chelation. We decided to wait this out for now.

[Speedy1wrc]

DaVita's threshold for "normal" is 40. We didn't even get into a discussion about chelation. Below 40 and they won't even discuss it. Fortunately my nurse is better than that.

[obsidianom]

DaVita's threshold for "normal" is 40. We didn't even get into a discussion about chelation. Below 40 and they won't even discuss it. Fortunately my nurse is better than that.

It should be up to the individual doctor not Davita

[Speedy1wrc]

Very true. However I have seen many Dr's bow to what the center "policy" dictates. The patient and Dr should be making the decisions.