My name is Audrina and I live in Glendora, California. In 2011, I had just graduated with my Doctorate in Physical Therapy, and was very excited to start my career as a Physical Therapist; helping to rehabilitate individuals after medical crisis, and helping them reintegrate back into society and life. I was also expecting my first child with my husband. At 26 years old, my life was absolutely perfect.
The symptoms began when I was 38 weeks into the pregnancy. It was Super Bowl weekend and my team was in the championship game, so naturally I was hosting a party, running tons of errands, and cleaning feverishly to prepare for this event. I had not urinated the entire day and at 38 weeks pregnant I felt it quite odd; however, attributed it to not consuming enough liquids and the California heat. When I did urinate that evening it was tinged red (blood). I thought my mucous plug had come out, as my due date was around the corner. I informed my parents and my father insisted I sit on a towel for the rest of the evening just in case my water broke. The next morning I woke up with a significant headache, tiny red dots (petechiae) all over my legs, and a good amount of swelling in both of my legs. Again, I attributed this to pregnancy; what woman, at 38 weeks pregnant, doesn’t experience “cankles”? I had an appointment with my OBGYN the next day, so I wasn’t too concerned and focused my attention on the game.
The morning of my OBGYN appointment, my headache, petechiae, and swelling had not subsided. In fact, I had new symptoms to report; my eyes were yellow (jaundice) and I had bruises all over my stomach. It seemed as though whenever my baby kicked or punched in my belly a new bruise would appear. I was still urinating blood, if I urinated at all, and I was becoming very tired. I left the doctor’s office with a prescription for Calamine lotion for my rash on my legs, which was really petechiae. At this point, my husband and I were very concerned but pushed our worries aside because we had just seen a medical professional who assured us that all was well. That night I couldn’t climb into bed because I could not bend my legs, as they had become so heavy and swollen with fluid my husband had to lift me onto the bed. The next morning, all of my symptoms were still present. I was crying in pain because my head would not stop pounding and my legs hurt so badly. My husband (who is a nurse) called from work to tell me he had been looking up my symptoms, and concluded I had HELLP syndrome, and should go to the hospital immediately. I said I would go after I finished the last load of baby clothes. I went to the hospital alone as I refused to believe I was ill; I had been healthy my entire life, I had exercised daily, and eaten correctly throughout my pregnancy, there was no way I was sick.
I was admitted into Labor and Delivery and labs were drawn. Thirty minutes later more labs were drawn and I was put on bed rest. There was no way I could be alive with the results that came back from my blood draw; there had to be a mistake. It was confirmed my platelets were at 4,000, my hemoglobin and hematocrit were far below normal for any individual who should be conscious, and my liver and kidney function were non-existent. I had at least 8 nurses and 6 doctors assigned to only me. Time was critical; my body was shutting down, and there were two lives to consider. They needed to get my baby out, but with a platelet count of 4,000 surgery meant almost certain death. My husband and mother were pulled out into the hallway where they were informed that I was gravely ill. There was a high possibility that one, or both of us, would not make it out of surgery alive. I was prepped for a cesarean section. I kissed my mother, father, sister, aunt, uncle, and finally my husband goodbye.
I woke up in the ICU with a breathing tube down my throat. I was breathing with the help of a ventilator, bleeding profusely from my abdomen, had bruises all over my body, and I was so swollen I couldn’t bend my arm or legs; but I was alive and I wanted to meet my baby. They wheeled her into the ICU in her basinet and in that moment all of my pain and fear disappeared. She was the most beautiful human being I had ever seen and she was mine. After a week of numerous steroids, blood, plasma, and platelet transfusions, I was stable enough to be discharged from the hospital and to follow up as an outpatient. I wish this was the end of my story but unfortunately, it was just the beginning.
I nursed my daughter and returned to work, but never felt completely healthy. There were several occasions when my co-workers and patients would ask if everything was alright at home because I had bruises all over my body. I had monthly, sometimes weekly, appointments with my hematologist as my blood counts never returned to normal. After 5 months of jaundice, bruising, headaches, petechiae, nausea, fatigue, and swelling I was diagnosed with TTP. I was immediately admitted to the hospital where I received plasma exchange and steroids for 7 days. Five days after my discharge, my numbers plummeted again, and I was admitted to the hospital for another round of steroids and plasma exchange. I had a very aggressive form of TTP, and was unable to sustain a normal platelet count for more than 24 hours without plasma exchange. During this admission to the hospital, I was started on my first round of chemotherapy in hopes of killing the antibodies which were attacking my immune system. It was also during this admission when my husband revealed he no longer wanted to be married and could not handle all that was occurring in our lives. I was destroyed. How had my life changed so much in just 5 months?
For the next two and a half years, I was in the hospital as an outpatient for daily plasma exchange, IVIG, steroids, transfusions, Chemotherapy, immuno-suppressants, and every other possible treatment for TTP. Occasionally, I would get a holiday or Sunday off, but this would result in critical labs and usually admission as an inpatient. My daughter grew up in the hospital. She took her first steps in the hospital unit where I received all my exchanges and by 10 months knew when, and how to put a mask on for mommy’s Quinton catheter dressing changes. It took me several hematologists, over 360 plasma exchanges, and over 22 rounds of Chemotherapy; in addition to, countless blood transfusions, immuno-suppressants, allergic reactions, and steroids to enter remission. I stayed in remission for 1 month before relapsing and starting the process all over again. Through the great care, advocacy, and concern from several hematologists, I am once again in remission and have been for the past year and a half. I still have to receive plasma and drug infusions (as I was also co-diagnosed with another rare disease called aHUS) every other week to maintain stable lab counts and remission. I have a Port-A-Cath in my chest for my infusions so I don’t have to get stuck with an IV every other week.
While my life has turned out to be nothing I could have ever imagined it to be, I am so thankful to be alive and to have the opportunity to raise my daughter, who is now 4 years old. I am currently able to work as a Physical Therapist, and take great pride in advocating for my patients as so many have done for me. My family and friends have been a great source of support and inspiration during this journey, and “Audrina’s Army” will be participating in our third Walk to Answer TTP Together this September.