One morning in my mid-30's, I woke up feeling light-headed and odd. When I went to the bathroom, I noticed what appeared to be a red, pinprick-type rash all over my legs and arms. It was not a raised rash, though. It seemed to be under my skin.
I dropped my daughters, 2 and 4, at preschool and returned home. I noticed the "rash" now covered my entire body. Huge red bumps had formed on the insides of my cheeks. I felt a bit foggy-headed and tired, but I attributed these symptoms to a pretty violent stomach virus I had suffered a couple of days earlier.
My intuition told me I'd better call my doctor for an appointment. My husband was working out of town Mondays through Fridays at this time, so I arranged for my parents to pick up the girls and keep them until after my doctor's appointment.
Little did I know that my doctor would send me to the emergency room after taking one look at me. He explained the "rash" was "petechiae," tiny spots of blood leaking from capillaries under my skin. The "bumps" in my mouth were blood blisters. He'd seen only one patient with these symptoms before in his 30+ year career, and it was "ITP." - Immune Thrombocytopenic Purpura caused by low platelets.
I needed to get to the hospital immediately. He called ahead for me to be seen the moment I stepped foot into the ER for a clotting test and bloodwork. He called my parents and husband while an ambulance transported me to the hospital.
My brain was foggier by the moment, and in retrospect, that served me well because I didn't panic. In the ER, I failed the blood clotting test. When they drew blood for a complete blood and platelet work up, my arm turned black and blue from shoulder to wrist.
I was admitted to the AIDS/Oncology ward. By that time, any touch against me left bruises. An oncologist with a group of interns assigned to him crowded into my hospital room. He performed bone marrow aspirations on each hip bone while I lay flat on my stomach enduring the grinding pain while being told not to move. Fun times.
All my labs were marked URGENT, RUSH. After three hours, the oncologist and my doctor visited me to tell me my doctor had been correct: the diagnosis was ITP. I did not have rapid onset leukemia or AIDS, both of which can mimic ITP but have other symptoms.
They explained to me that ITP is an autoimmune disease characterized by an abnormal decrease in the number of platelets in the blood. A person's blood doesn't clot properly because the immune system destroys the blood-clotting platelets. The cause of ITP is not known, but it is due to an immune system error that may be triggered by viral infections.
They believed the awful stomach virus I had earlier that week somehow flipped my immune system, signaling to my spleen to destroy all platelets.
The average number of platelets a healthy person should have is 150,000 - 450,000 per microliter of blood. My count? 3000. If I had not gone to the doctor, if he had not acted with urgency, if my diagnosis had been a few hours later, if platelet transfusions had not been given as quickly as they were. . . I would not be telling my story. I would have died.
My treatment plan was to have platelet transfusions, along with an IV drip of a very high dosage of prednisone, which hopefully would "flip" my immune system back to working properly.
A splenectomy would be the next step if my platelet count did not begin rebounding.
After a week in the hospital, my platelet count reached 11,000, which allowed me to be discharged. I had to go three times a week to the oncologist for platelet testing while taking 120 mg of prednisone daily (hello roid rage!).
It took a year to build my platelets to 50,000. For the next two years, under the oncologist's monitoring, my prednisone dosage was decreased slowly as my platelet count rose.
Three years after I entered the hospital unknowingly on death's door, my count reached 100,000 without any relapsing. I was weaned off the prednisone slowly, and the count held.
I continued being monitored for five more years before the doctors agreed I was a lucky one. My bout with ITP seemed to be one-time situation, not chronic.
At the time I suffered ITP (early 90's), I felt lost at sea, having something so rare (10 out of 100,000 get it). There were no support groups for ITP. The internet was new. We could not find out much more than what the doctors had explained.
Today, the Platelet Disorder Support Association (P.D.S.A.) is dedicated to raising awareness and bettering the lives of millions of patients who struggle with ITP. This September, join the fight against it. Give your support to the silent sufferers of this disease.
Sport Purple on September 29!
Read more about ITP HERE