Friday, July 27, 2012

Sjogren's Syndrome and Kidney Involvement

I have end stage renal failure ultimately caused by Sjogrens. Apparently it has been going on for quite a bit, but it was being sneaky. In fact, I am sure it was going on before I even knew I had an autoimmune disease. Darn sneaky systemic disease. Bad Sjogrens!!
I am not on dialysis as of now.....I was suppose to be nearly 2 years ago. I truly believe prayer has played a big part of that. My kidneys hang on to functioning at 15%-18%. I have renal tubular acidosis (RTA) which causes metabolic acidosis. The way I have explained it to my two little pumpkins is like this.... A filter for a pool is necessary to clean all the yucky stuff out of it yo make the water clear, clean, and refreshing. Occasionally chemicals are added to the pool when the water gets cloudy including good ole baking soda. Our kidneys are our filter to make our blood clear, clean, and refreshing just like the pool's filter. Also just like the pool's filter we need to add sodium bicarb (good ole baking soda) to our body to help the kidneys. It helps with the acid, ph balance, and electrolytes. Of course as kidney disease progresses other medicine may need to be added.
Now if you have renal disease these electrolytes are tested. Mine are tested 2 x a month because if your electrolytes are screwy......then you are screwy! :-) My last hospital visit in March was because of my potassium being at a critical low. My sodium bicarb was extremely low. Calcium was a little low. Phosp
hate was high and the only thing normal was my magnesium. I was more lethargic than normally. I felt like I was going to hit the floor and never wake up. It was honestly a horrible feeling. I remember working and calling my nephrologist telling him something wasn't right. (Listen to your body) I stayed and worked because that was what I did. (Push myself to absurd physical levels) The following morning I called again and told them something was definitely wrong. After STAT bloodwork, they told me to go the emergency room. Long story took 9 bags of potassium in my IV to get my level normal. That is like enough for an elephant! levels are low, but not critical. We maintain them through 120 Mg. Of potassium citrate. Also enough for an elephant. The good news the past 2-3 years there is more information out there about Sjogrens and renal involvement. Also the other organs it can effect. As I said I am waiting for a kidney transplant. I cannot wait to share my news about my possible donor and the latest update on that news.

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