Patient Story: Amy Farinella

I was diagnosed with aHUS in January 2022 after the birth of my second child. Prior to that I was diagnosed with preeclampsia during the second trimester.

On the night of January 19th, four days after the birth of my daughter, I started to experience flu-like symptoms that worsened over the next few hours. By morning, I could barely breathe or move. I said goodbye to my children, praying I would be back later that night, and my husband and I made our way to the hospital.

The Omicron variant of COVID was rampant at that point so I had to weather this storm without my husband once we arrived. I quickly met a myriad of doctors, including my nephologist. He told me that they were sure I had HELLP syndrome, which made sense with preeclampsia. The odd thing was that my blood had changed so much since I was in the hospital a few days ago, the lab kept throwing it out. Eventually they tested it and determined that my platelet count was extremely low. Two doctors from the ICU came and told me I was being admitted and not to be scared.

When I entered the ICU, a tube was put into my neck so I could receive a platelet transfusion. I was also put on oxygen and a magnesium drip because my BP was not cooperating again. I was in shock and remember struggling to breathe a lot. I couldn’t conceive of the fact that I had a newborn baby at home and I was being kept here.

I met my hematologist the next day. He gave me a breakdown of my labs and tests and then called my husband. The outside communication was incredibly helpful. The next day my nephrologist told me they no longer believed it was HELLP and something else was going on. I was also being scheduled for bedside dialysis. I have no memory of my actual diagnosis and I believe my brain blocked out a lot of things as a way to cope, but I know aHUS was determined about three or four days into my stay in the ICU. I am incredibly lucky that my doctors not only recognized aHUS so quickly, they were willing to admit early on that their original diagnosis was wrong.

I remember receiving my first infusion of eculizumab. After five days in the ICU, I was transferred to the dialysis ward and a CVC was put into my chest for future treatment. We spent the next few days waiting for my hemoglobin to improve. I also received two more rounds of dialysis and another infusion. Visitation restrictions were revised and I was allowed to see my husband for the first time in a week.

After nine days in the hospital, I returned home and embraced my babies. A few days later, at 5:00 am, I entered into the world of outpatient dialysis. It was a heavy lift to balance endless doctors appointments, dialysis, and the infusions with the challenge of taking care of our family. Dialysis took so much out of me that I slept for hours after a treatment, usually with the baby on me. Thankfully my insurance company requested home visits for the bi-weekly infusions. My kidney function rapidly improved shortly after my release from the hospital and I was able to stop dialysis completely within a few weeks.

I went back to work at the end of March and slowly figured out how to balance family, appointments, infusions, and work life. It definitely didn’t happen overnight and I was exhausted most of the time. I was also getting extremely tired immediately after the infusions.

In June I received the results of my genetic testing. We celebrated the news because it was determined that I do not have a known genetic mutation. My doctor consulted with a friend (an aHUS expert). He told me that while I was more likely to be predisposed to this disease than most, it would take a catastrophic trigger for it to happen again. Luckily, this news meant I could stop the infusions at the end of the year.

I celebrated my last infusion at the end of 2022. I am currently nearing the end of my year-long monitoring period with my hematologist. I am nervous about this, but also thankful to be in this position. My goals for now are to keep my body as healthy as possible and to work on the mental trauma that was caused. I am forever grateful for the continued care of my amazing doctors and the support of my loving family.