TRACEY'S ITP JOURNEY

There’s nothing that quite prepares you for the late night doctor’s call (actually 2 calls on consecutive nights-first my Internist, then my new Hematologist) 5.5 years ago. I knew a little about ITP, as a friend had been diagnosed in her 20’s. What I didn’t know was how it would forever change my life. I assumed they’d find a drug to give me and I’d move on. I had no idea that for the next 3 years I would receive more bad news, then good, that the roller coaster of platelet counts and the emotional toll it would take on me was overwhelming, and that my body wouldn’t respond to so many different treatments thrown my way.

High doses of prednisone, was followed by Rituxin. Fifteen months after my diagnosis I made the decision to have a splenectomy, which at first seemed promising, but I learned failed a few months later. In that time, we discovered I had an accessory spleen (radiation to get rid of it also failed). We then moved on to Promacta, N-Plate then finally Tavalisse - all with their own side effects and alarmingly high costs. My platelets have been as low as 6,000 and for about a year, I lived between 12,000-20,000.

I’m thankful for a treatment that is currently working (3 years!) for a great team of doctors, my family, friends, and my faith. I spent years holding my breath…waiting for bad news. I pinned everything on that platelet count-was it going to be a good day/week or a bad day depending on where my numbers were? I’ve learned ways to cope with that stress-through meditation and Reiki. I feel mentally and emotionally strong with the help of a great therapist. I’m here to live in a BIG way, embracing life and being grateful. Presently I have blood work once a month, and I’ve been stable with fairly normal counts. Now I’m dedicated to helping others navigate life with ITP.

I would like to walk in memory of my friend Lisa Bauer Lewandowski, who fought a very courageous battle with ITP, before she passed from complications of it this year. She often cheered me on when I was feeling frustrated with my struggles with ITP and was truly a bright light for those around her.

 

 

 

 

 

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