RTA stands for Renal Tubular Acidosis and according to the National Kidney & Urologic Diseases Clearinghouse it is “a disease that occurs when the kidneys fail to excrete acids into the urine, which causes a person’s blood to remain too acidic.” Chronic acidity occurs without proper treatment and can lead to bone disease, kidney stones, growth retardation and chronic kidney disease. It is believed that this was the ailment Tiny Tim had in the classic Charles Dicken’s tale, A Christmas Carol. There are 4 types of RTA and my doctor believes I have Type 1 which is also called Distal RTA.
Basically what this means is that my kidney is holding on to the bad stuff, the acids, and getting rid of the good stuff like potassium & magnesium. This is the opposite of what your kidney should be doing. As a result my blood had become overly acidic and although my body had tried to compensate, the high acidic levels in my blood were starting to affect my organs. Thus the bowel problems that caused the diarrhea that led to this discovery. My doctor told me that the acidic blood was attacking my bones and even causing me to hyperventilate (which is why I would occasionally take random gasps for breath on a reflex).
But let me back up a few years to when this really started. In March of 2009 I woke up one day partially paralyzed because my body has lost almost all of its potassium. Of course we had no idea that was the case until after spending a few hours in the ER and getting multiple tests done (including a spinal tap). Since potassium is needed for your muscles to function properly, I was unable to move most of my muscles. When I was admitted to the ER my potassium levels were a 1.0 and the normal range is 3.5-5.0. Although I saw multiple specialists after that episode, no one could figure out why my body was not retaining potassium. Since our bodies do not make potassium and since I was losing potassium, I was prescribed 60-80 meq of potassium chlor-con daily. I also had to alter my diet to low sodium and high fiber and cut out Coca-Cola (Coca Cola absorbs the potassium in our bodies).
So for the last 2 years I lived this way with occasional bouts of muscle pain that I chalked up to too much sodium in whatever I had eaten recently (there is sooo much sodium in sooo many things!). And then the Tuesday before Thanksgiving I began having terrible diarrhea with no other symptoms. As the days progressed it became harder for me to hold anything down, even simple liquids like chicken broth or water. By Monday I was starting to feel some loss of muscle in my legs and knew that despite guzzling Gatorade and continuing to take my potassium supplement, I was becoming dehydrated. We went to the ER once again. When they checked my potassium levels they were at 2.2 and my blood pressure was 85/43. Definitely dehydrated. They admitted me and put me on a heart monitor as our heart is our strongest muscle and with severely low potassium levels your heart can stop. I was given a saline and sugar IV and potassium drip, kept on a liquid diet, and had a lot of blood drawn for the next 9 days. During this time the admitting doctor called for a consult with the kidney doctor at the hospital; enter my hero. The nephrologist was the one who caught the RTA and Sjogren’s Syndrome.
Yes, Sjogren’s Syndrome. That’s the next part of this story as I have that also. I believe the RTA was caused by the Sjogren’s. See my next post for more on this invisible illness.
On an interesting note, my test was sent to the Mayo Clinic and because RTA is so rare even they could not run the test; they sent it to somewhere in New York. My doctor told me I was a very unique girl. Hmph. I coulda told you that!