I have had this deadly disease twice, along with my FSGS. They said it was because of a high calcium and phos product. They removed all of my peri-thyroid glands in my neck, thinking it would help but the calcifalaxis came back. This was an extremely painful and like 80% fatal disease. I just dont know that much about what I can do to prevent it from returning again.
I am not sure if this pertains to our situation, but here is what I know about it.....From what I understand, phosphorus control is partial key. It is not uncommon for those with kidney disease to have all of the parathyroid glands removed, but they have to remove them all. When they kidneys are damaged, the lost the ability to remove phosphorus from the blood. When the Phos. levels get too high in the blood, it somehow counteracts the calcium levels, which cause the bones to release calcium into the blood. This leads to high levels of calcium and brittle bones. I may be off on this and would advise that you Google hyperparathyroidism, calcifalaxis, and anything else you can think of. You can also find out a ton of info on www.ihatedialysis.com...you have to register (free).
Since I was considered stage 4, I have limited my phos. consumption as much as I can....no dairy anything, no chocolate, no dark sodas (coke, pepsi, etc) no tea unless brewed. Eventually, this will not work as my kidney function continues to decline and I will have to take phosphorus binders. I read food labels too...if the ingredients mention any kind of phosphate, I avoid it. Here is the link for the US nutrition values of all foods....I downloaded the phosphorus one myself. http://www.ars.usda.gov/Services/docs.htm?docid=17477
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