January-February: No progress

The day after going home my sodium was down into the 120s again. I was told to start Sodium Chloride (NaCl) 1 gram three times a day and to restrict my fluids to 1.5 liters (50 ounces a day). The month following being discharged from the hospital was a complete waiting game. Over the course of next four weeks I had my labs checked about twice a week and despite being on NaCl tablets and fluid restriction my sodium was not stabilizing. I was at the lab so much, the employees there knew me. The phlebotomists really got to know me and would tell me whether I was looking good or not so good. They even suggested I put myself to work while I was there waiting since I was spending so much time there.

The Nephrologist I was seeing ordered some further testing to rule out pituitary tumor and cortisol involvement and all came back normal. The diagnosis was now idiopathic SIADH. In other words, no one had a clue why I was producing so much ADH and diluting my sodium. My symptoms were another head scratcher. I was fatigued, really short of breath and still hardly peeing at all. My headaches were unrelieved by Tylenol, and I felt very fatigued...... but there was no known cause, so it must be my anxiety level that was producing ADH secretion..... Yep, was actually told that!

Eric was not willing to settle and believe that this was my new normal. He had just returned from a business trip to Mayo Clinic and after getting a behind the scenes look at what health care there was like he was insistent that we go and see what they think. I was hesitant and first. I mean people only go to Mayo Clinic if something is really wrong and I just had low sodium...…..Or so we thought.
We called Mayo and could not believe how fast we were able to get in.  Around here, my Endocrinology consult was made in January and was not until April 17!!!!! We were able to get into the Nations Number 1 hospital and be seen in less than 2 weeks. Our appointment was set for February 13. And thank goodness we did because On February 7 at a sodium of 132, my Nephrologist decided we should see what happens when I stop NaCl. I had been weaning off them and holding in low 130s. On February 10 with no supplemental sodium, I was back down to mid 120s. It was at that moment that I knew Eric was right, we had to go to Minnesota and see what Mayo had to say.

Mayo Clinic in Rochester, MN