I remember the day as if it was yesterday. It was a sunny morning in early July, and I was heading to the clinic for a routine blood test. Hypothyroidism had been part of my life for years, and when I was younger, I was diagnosed with a frontal lobe angioma which caused developmental problems when I was growing up. So, I was no stranger to these appointments or seeing doctors. My pediatrician suggested a full blood panel since I was about to move to Hawaii for college. I thought nothing of it. Just another check-up.
A few days later, my doctor called with results that took me by surprise. My platelets were at 81,000, when just this past April, they had been a healthy 320,000. She wasn't overly concerned, attributing it to a possible lab error, and told me to redo the test in a week.
A week later, I did as instructed. Excited for my upcoming adventure in Hawaii, I decided to go to Disneyland with my sister, but something felt off. I was struggling to walk, constantly exhausted, and every step left me more sore than the last. I had to sit down every 30 minutes just to catch my breath.
It was during one of these breaks that my phone rang. My doctor’s voice was frantic, panicked – my platelet count had plummeted to 40,000. She urged me to stay at home and come in for an appointment immediately. The joy of Disneyland evaporated in an instant, replaced by a cold fear.
The next morning, I attended a funeral for a family member. Standing there, I noticed tiny red dots spreading across my skin—petechiae—and I was covered in bruises. After the service, my dad, visibly worried, called 911. They directed us to the nearest hospital, urging us to explain my situation upon arrival.
We arrived to a flurry of activity. Thirteen doctors swarmed around me, assessing my condition. My platelets were now undetectable, and I was slipping in and out of consciousness. I was immediately put on IVIG for several days, then switched to pulse dexamethasone. The severity of my situation hit me hard when I began to have internal bleeding, leading to a strict regimen of Amicar every six hours.
The days blurred together in a haze of fear and pain. I was told by several doctors that my chances of survival were slim especially if I began to bleed in my brain. I had to sign off on my wishes, and a priest came to bless me. It felt like I was on the brink, teetering between life and death.
Miraculously, I pulled through. I avoided the dreaded internal bleeding in my brain and spent over a week in the ICU. But leaving the hospital wasn't the end of my battle. ITP has no cure, and I was put on a high dose of prednisone and several other medications. The steroids took their toll on my body, and I faced frequent hospital visits, even after moving to Hawaii.
Friends became my lifeline. One time, I bled so heavily that a friend rushed me to the hospital for an emergency platelet transfusion. Similar events happened multiple times. When the steroids failed, and my platelet count dropped dangerously low, I sought treatment with Rituxan, but insurance denied it three times.
About a year ago, I started on Promacta, which astonishingly stabilized my platelet count. I even traveled to a specialized hospital in the Netherlands for an indium test, which helped me avoid an unnecessary spleen removal. The test showed that my liver was also consuming my platelets, a bittersweet revelation.
Through it all, I faced additional diagnoses: POTS, SVT, and more autoimmune issues. Each new diagnosis felt like another weight added to my shoulders, but I learned to carry it. Despite the challenges, I found solace in my new life in Hawaii, surrounded by supportive friends and incredible doctors.
Two years later, my ITP is in remission, and my other conditions are managed. The journey has been a rollercoaster of weekly blood tests, heavy steroids, and cross-country medical trips. But now, I can dive into the ocean (I love scuba) and live a life that, while not perfect, is still beautifully mine.