Lucky to be Alive After Close Call with Atypical Hemolytic-Uremic Syndrome

by Robert Myrick

My story starts a month before everything changed for me. A month before my problems came to light, I had a persistent cough that I could not get rid of. I eventually visited my doctor and he assumed it was just my allergies and gave me a steroid shot and sent me home. After a few days I began to feel really weak and tired all the time, lost my appetite, couldn’t sleep and barely had the energy to do anything, which is not like me. My wife tried to get me to go to the ER but I advised her that was not necessary and that I was okay, but little did I know I was not.

After a few days of this I decided to go back to my doctor to see what was going on and the first thing he did was take my blood pressure. Then he took it again, and again. I asked why he would take it 3 times and he advised me I would have to go to the hospital as my BP was reading 250/190.

On my way there I just broke down and cried. I called my mom, wife and a few friends to tell them where I was headed and that they could later join me there. To make a long story short, I got admitted to the hospital, ran blood test, heart scans, hooked up to 3 different IV’s and they discovered my kidneys were functioning at less than 3% and my heart was not functioning at full capacity. I immediately went on dialysis where I would  do treatments three times a week, After spending six days in the hospital (first three days in ICU) I went home, but wondered what caused my body to almost shutdown? After many test including a kidney biopsy and doing two more months of dialysis, I was able to get off dialysis as my kidney function was getting a lot better but my doctor still didn’t know what happened.

Three months later, after my results came back from a genetic test, it was found that I had Atypical HUS. Since that day I have been getting a medicine called Soliris every other week at the hospital with hopes of containing this disease. So far, it’s doing the job and I have no limitations on what i can do. My advice to anyone that is dealing with a disease such as AHUS is just stay positive! Continue to live your life every day not worrying about what tomorrow brings and live in the moment. For me, there is no reason why I shouldn’t be happy and enjoying life with my family because my life could have ended on that day. What if I didn’t go to the doctor that day? What if I waited another day to go? Those are things I ask myself a lot but what I can tell you is GOD had a different plan that day and I’m lucky to be alive today.