ITP Warrior - Jeffery

My ITP was diagnosed in 1997 after I was inflicted with the flu. I started exhibiting petechiae on my trunk and legs but didn't recognize it at the time. I felt an overwhelming urge to go to the doctor because I wasn't feeling well. Not because of the flu, it was different.

When I went to the doctor, three doctors came in after my blood draw and said they needed to hospitalize me. After my diagnosis, I had a splenectomy in '99. My platelets leveled out, but later my ITP became refractory. I went through IVIG, Rituxan, Prednisone, and finally Nplate.

I was on Nplate for 13 years, and then it stopped working.

I had a CT scan for other issues and discovered that my spleen had completely grown back.

I recently had another splenectomy, and my platelets have leveled at 200-300 plus. I hope this holds this time.

If you become refractory and have had a splenectomy, get a CT scan. Who knows? Even a large accessory spleen (splenule) can cause platelet destruction. My case is considered rare, but get checked anyway. Maybe it isn't as rare as we think.

* What lessons, encouragement, or advice would you offer others with ITP?

- Always be proactive and don't just blindly follow doctors' advice. Do your own research and use as much information as possible to make informed decisions.

- Keep healthy. Avoid alcohol and tobacco, and eat whole foods, especially foods that support platelet production, such as pomegranate and papaya.

- Stay away from fast food and limit processed foods.

- Avoid processed vegetable oils, margarine, and seed oils. Instead, lean toward avocado oil, olive oil, and animal fats such as lard, butter, and tallow.

- Lower your sugar intake, increase electrolytes, and stay hydrated.

- Exercise regularly. At the very least, try to walk every day.

- God bless, and may your journey be a blessing to others.

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