Well, It Wasn’t Typical and It Wasn’t The Flu: Atypical Hemolytic Uremic Syndrome

Erin Adams from Fenton, Michigan underwent many tests in the ER before a rare diagnosis of atypical Hemolytic Uremic Syndrome. But could a new experimental treatment turn things around?

The day was July 1, 2006. I was in the critical care unit of one of the largest hospitals in Indiana. The doctors were talking to my family about my diagnosis, atypical Hemolytic Uremic Syndrome (aHUS) and how if I didn’t go to the emergency room 3 days earlier I would have probably died. I started my journey in a small community hospital, dehydrated, where I couldn’t stop vomiting, feverish but freezing cold, and I kept passing out. The doctors were stumped. They could see that my kidneys were shutting down and that my blood count was critically low but they didn’t know why.

I thought that it was just the flu. I was wrong about that. Thank goodness my grandma was around to take me to the emergency room. I went through every test imaginable and was eventually transferred to a larger hospital under the care of an oncologist and a nephrologist. It was those two doctors who diagnosed me within 24 hours and that’s when the whirlwind began. I was 28 years old. I was rushed to interventional radiology where a catheter was placed in my neck to prepare for plasmapheresis. I was scared out of my mind. I continued the plasmapheresis on a daily basis, even after I was discharged from the hospital. This went on for five months and I wasn’t showing any signs of significant improvement and my oncologist decided to try a low dose chemotherapy, Rituxin. After four doses of chemo, I was declared in remission. But that is not where my journey ends.

Fast forward to January, 2010. I’m starting to get horrible migraines again and I start throwing up. My blood pressure is through the roof so my nephrologist tells me to go to the emergency room. I call my then-boyfriend and he takes me. The ER doctors get my headache and blood pressure under control and discharged me with the instructions to follow up with nephrology the following day because my creatinine was really elevated. I did as I was told and once nephrology got my labs from the hospital I was to to immediately go back.

I needed to be admitted for fear of relapse. Once all of the tests came back, it was confirmed. I was hemolyzing again. I started crying. Plasmapheresis is really hard on your body and I knew that plasmapheresis doesn’t work for me. I did the plasmapheresis for about a month when my nephrologist wanted me to talk to a new doctor in the oncology group that I went to. He is part of a study for a new drug for aHUS. It was meeting Dr. Babu where my journey brought me where I am today.
I have been in Soliris since February 2010. I was part of the original test group for this life changing treatment. Plasmapheresis never would have turned my disease process around because I have the atypical strain of it. I really wanted to go off of the drug when it became FDA approved but was cautioned against it by my case manager at Alexion (people got sick again when they went off of it) and my nephrologist definitely was against me going off of it because my kidneys can not handle another attack. I am already stage 3 chronic kidney disease and there isn’t much left for me to go. I was really upset when I relapsed. I was told less than a 5% chance that I would get sick again but I didn’t get a flu shot in 2009, got the flu, and that flu was enough to set me into another episode. My mom says I should play the lottery, who gets a rare disease and then gets a rare relapse on top of it?!

Sometimes it really sucks going to the doctor every other week to get my Soliris. Getting poked and prodded all the time isn’t what I call a good time, in fact, I’ve developed an allergy to adhesives since getting sick. As my mom says, “It’s a small price to pay to stay healthy.” She is a smart woman. Oh and that boyfriend who took me to the emergency room that January evening? We just celebrated our 3 year wedding anniversary. He can be my mother hen sometimes but I love him just the same. I am fortunate to have met some pretty incredible people on my journey and have made some pretty strong connections with some doctors and nurses but I will forever be thankful for my husband and my family because without them, I wouldn’t be here today.