Just a Rash or Something More? How One Symptom Led to an ITP Diagnosis

Posted on September 1, 2023

There I was on the oncology floor of the hospital, showering and doing my laundry like I was in a hotel. I felt like an imposter while around me, people with cancer were fighting for their lives. If it weren’t for the six-hour shifts of intravenous immunoglobulin (IVIG), a Benadryl cocktail chaser, and a side order of Solu-Medrol, I’d never know anything was wrong.

Five nights before, on a Thursday, I came home late after eating with a former colleague. When I noticed the house was quiet, I decided to grade essays. While waiting for the laptop to boot, I noticed a rash on my arms and figured it was a food allergy. I made the mistake of searching Google Images for a rash that matched mine and quickly shut down the laptop. After changing clothes, I woke up my husband to show him this rash was everywhere!

I learned at the clinic that my rash of purple freckles was called petechiae, which forms when capillaries break and blood seeps out just under the skin. My doctor took some blood and called me two hours later to tell me I had only 13,000 platelets and to come back Monday for another check. But when the petechiae disappeared three days later, I thought my doctor’s concern was a false alarm. Unfortunately, the absence of petechiae didn’t mean that I was out of the woods.

On the way home from the doctor’s office Monday, a hematologist’s office called me for an 11 a.m. appointment Tuesday. Google Maps led me to an address that read “CARTI” on the marquee. Central Arkansas Radiation Therapy Institute is a cancer center.

“Cancer? I don’t have cancer!” I thought.

Nevertheless, I waited until my name was called to be bled again. A few minutes after the phlebotomist handed my blood to the lab tech for counting, I heard: “Wrap her arm tight; she doesn’t have any.”

In four days, my platelets had fallen from 13,000 to none, zero, nada. What in the world was happening?

It didn’t take long for the hematologist to call me. He asked me if I had noticed any nosebleeds, bleeding gums, or hemorrhaging from my bowels, and I said no. My only bleeding came from über-scratched mosquito bites, but I had no bruises to go with them, either.

Hemorrhaging and bruising usually go together when platelets are low. Platelets connect and weave like a net holding the blood cells together so that they clot inside and don’t escape. Having immune thrombocytopenia (ITP) is like having holes in a net. Without enough platelets to connect and hold the blood inside, bleeding can occur externally through body openings or internally, where no one will know until it’s too late.

The doctor also asked me if I had noticed any fatigue or dizziness, and I laughed, shaking my head. A drop in platelets may cause both, but so can the stress of having a teenage son and an elderly mother. Three years earlier, I had resigned from teaching because of fatigue and pain from rheumatoid arthritis. Fatigue had become second nature to me, so I didn’t remember anything new.

Finished with his exam, the Oxford-trained hematologist stated, “You’re going to hospital today.”

“But I can’t,” I said, wide-eyed. “Our son is on a school trip and not returning until 6 p.m. We have no family here and know no one well enough to care for him. And besides that, my husband is teaching class tonight.”

Quietly, he said, “Fine, then. Don’t fall. Don’t bump your head, and don’t cut yourself.”

I said, “You’re scaring me, Doc,” to which he replied, “Good.”

I drove home, packed a bag, called my husband, and called my mother in that order. I never considered that I could have had an accident and died because I had no platelets. I was running on adrenaline, and because I didn’t realize the danger I was in, traveling by ambulance never occurred to me.

Patients are labeled with a disease by the effects presented, but I’ve learned that ITP doesn’t present in the same way in everyone. Patia Braithwaite acknowledged in the June 2019 issue of Self magazine that some people don’t have any observable characteristics: “ITP becomes a concern if a person’s platelet levels dip below 100,000 per cubic millimeter of blood, but that still doesn’t mean you’ll show symptoms. Some people are diagnosed with chronic ITP just because blood tests have put them in that range for prolonged periods of time and doctors can’t suss out any reasons why.”

When my husband came home, we picked up our son and drove to the hospital 100 miles away. By the time we got to the room at 9:30 p.m., a surly nurse said she had looked for me since early afternoon and wondered if I was taking this condition seriously. She told me to kiss my family goodbye, take off my clothes, and get in the bed. Thirty minutes later, I was hooked up to an IV.

That hospital visit was one of two. The first time, I was thrilled to have 150,000 platelets by my discharge on Day 8. I was home for a week before reporting to CARTI for a post-hospital visit. Imagine my surprise when I learned I had lost 147,000 platelets and was sent back to the hospital. This time, I had no petechiae, no hemorrhaging, and little bruising but much fatigue. After five days of IVIG and Rituxan, I left the hospital with a whopping 36,000 platelets and started a two-year-long protocol of an Nplate shot every time my platelets dipped below 100,000.

Having ITP sometimes feels like there’s an assassin inside. And let’s face it, the only way to know how your platelets are doing is to bleed, but it’s best to bleed under controlled conditions. You might (or might not) have symptoms past petechiae, but once you have been diagnosed, to deny the gravity of your condition is to live with a false sense of security.

On myITPcenter, members discuss immune thrombocytopenia from a specific point of view. Members’ articles don’t reflect the opinions of myITPcenter staff, medical experts, partners, advertisers, or sponsors. Content on myITPcenter isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

If you have a story about life with ITP you'd like to share, learn more about a writing opportunity with myITPcenter.

Posted on September 1, 2023

Veronika2

My heart bleeds for your condition, but I rejoice at the faith that continues to carry you through, and that you were diagnosed in time ❤️

posted September 2, 2023
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Janet Rico-Everett, myITPcenter Member contracted immune thrombocytopenia in March 2018 and is now in remission. Learn more about her here.

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