Where to begin...
My new life journey began in January of 2009. After feeling sick for weeks, I went to the doctor. She ran some tests and concluded that I probably had a kidney infection. Three days later I was at the Insta-Care where the doctor told me I might have Leukemia and that the emergency room was the place that I needed to be. (On a side note, my husband and I had taken our youngest daughter with us because her older brother had tried to teach her to jump over a chair and she had a broken foot.) Back to my story, we went to the emergency room and had lots of test done. It was determined that something was very wrong with my kidneys and I need to go to a different hospital since our town does not have a nephrologist. So we drove an hour to the correct hospital, where our lives would change forever.
I had a wonderful doctor who walked in the room and said, "I know what you have, but I want to run some more tests". He diagnosed me as having HUS (Hemolytic Uremic Syndrome). Oh, how I wish it was that simple. I was admitted and began dialysis and plasmaphoresis. I was in the hospital for 3 weeks and then came home to start dialysis at the center in my town. I was on dialysis for 1 month at home and was "cured". I had only been off dialysis for 2 weeks, when the symptoms returned. I went back to the hospital for more plasmaphoresis and dialysis. I was discharged home and was "cured" again. Within 2 weeks, the symptoms were back. My kidney function was good, so I did outpatient plasmaphoresis treatments and was started on a round of Rituximab. That worked for 3 weeks, and then the symptoms came back agian. More plasma treatments and Rutuximab was prescribed. By then my kidney function had declined and dialysis was started (July 2009).
I went to dialysis at the most wonderful center in the whole world. More on them later.
By December my labs, were not good and another round of Rituximab was prescribed. I was ready for a diagnosis that would at least explain why the symptoms kept coming back, but all the doctors were stumped. We decided to get another opinion, so we went to a major cancer center, since we needed a hematologist. It took one and half years of waiting, sending my blood to the University of Iowa, and then waiting for the test results. They finally came. It was not good news. I now have a diagnosis of aHUS (atypical Hemolytic Uremic Syndrome) with a factor H deficiency. So for right now, that means no transplant in sight.
So here we are, May 2o11. I now do dialysis at home, thanks to Nx Stage. Now we just wait and see where the journey will take us.
P.S. I love all my doctors and know that they have worked very hard to find a diagnosis for me. I have no complaints about the length of time that it took to find a diagnosis. Please no doctor bashing. I would recommend every one of my doctors to any out there.
