Real Women Real Stories, Blood Disorders, Blood Clotting, Attp

Real Women Real Stories, Blood Disorders

Coping With a Rare Blood Disorder

How an unexpected aTTP diagnosis taught me to live in the moment

9/17/2021 12:36:00 AM

Hear what it’s like to cope with aTTP, a rare life-threatening blood disorder.

How an unexpected aTTP diagnosis taught me to live in the moment

As soon as the treatment started, my body went intoanaphylactic shock: It turned out I was allergic to the plasma. I was given heavy medication to counteract my reaction and wound up spending 10 days in the hospital. My physician informed me when I left the hospital that I had to stop breastfeeding my daughter and that it would be extremely risky to have more children. It was incredibly hard to hear that.

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In a way, life went back to normal after my initial episode in 2016: I went back to my full-time job in healthcare administration. I continued to enjoy time on the lake, boating with my family and cooking, which I love to do. But the threat of having another aTTP episode hung over me.

One of the hardest things about having aTTP is that it's so random and can hit at any time. Without warning or notice, you can experience another aTTP episode that disrupts your life. My second aTTP episode occurred three years later, in 2019, the week we were going to Mexico for a family vacation. I spent the night before the trip in the hospital being treated for aTTP while at the same time coordinating a notarized letter so my in-laws could fly with my children and go on our much anticipated trip without me.

Then early this June, I woke up with a large, black bruise on my stomach. Knowing that I hadn't been hurt or injured, I immediately suspected an aTTP episode, so I went to the hospital to have my platelets checked. Within 30 minutes, I heard from my hematologist: I was having an aTTP episode that required hospitalization and treatment.

For me, each episode has required a minimum of five to seven days of inpatient care at the hospital to stabilize my platelets and receive treatment. And this time, my children — now 5 and 7 — couldn't visit me because of the Covid-19 pandemic, which was really tough.

This latest episode was especially surprising because I had seen my hematologist the week before and my labs were normal. In five days, aTTP had reared its ugly head.With each episode, there's a risk of increased complications such as major organ damage. Since my diagnosis five years ago, I'm more fatigued, don't have as much energy, have chronic pain and occasionally experience short-term memory loss.

But I do my best not to let aTTP hold me back. I continue to work full time and live an active life. I love to take my kids to the park, repaint furniture and read, although it's difficult to focus on storylines right now. I also work in support of fundraising for aTTP research, awareness and advocacy efforts.

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Having a rare disease has made me realize that not every day is a given. As a result, I do my best to live in the present and relish every moment with my kids, husband and collection of pets. When I turned 35 in April, I said this was going to be my best year yet. Despite my latest aTTP episode, I still believe that'll be true.


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