ITP Warrior - Marcia

I considered myself to be a pretty healthy adult, until I had my Medicare physical at the age of 65. My doctor informed me that I might have ITP because my platelets were at 90,000 and referred me to a local hematologist. The hematologist ran several tests and concurred that I did in fact have ITP. He then sent me to a rheumatologist because I had also tested ANA-positive. He ran tests as well, and said he was sure I had lupus. So that’s two! I was able to avoid being treated for ITP because my platelets were hovering around 50,000 - 80,000, and I received no treatment for lupus because I wasn’t having any symptoms.

In 2017, I was diagnosed with triple negative breast cancer. Talk about a triple whammy! I had a lumpectomy, and did chemotherapy for three and a half months, then radiation for two months. Chemotherapy lowers platelets, and mine crashed to 13,000 after the first treatment, so they tried dexamethasone. It didn’t work, so they put me in the hospital and gave me a platelet transfusion, which didn’t work either. Then they tried 60mg of prednisone and it worked! The prednisone put me up to 101,000 and I got through the next few months of treatment, but with that kind of dosage, I wasn’t sleeping well. My husband and I had a chance to rescue a dog named Grace, and all the doctors and nurses thought it would be great for my morale while going through all the treatments – and it was! I loved walking and playing with her! But after my second treatment, my husband felt ill; in fact, he waited until I was done with my infusion and then told me, and we immediately took him to the emergency room. He ended up having serious blood clots and needed surgery. We had to give up our dog, but luckily our friends took her in.

When I first heard the news that I had ITP, I thought I was going to die! The doctors didn’t tell me much, but then I found out about PDSA online and it was a godsend! I felt so fortunate that I wanted to start a PDSA ITP Support Group and I started one in The Villages, Florida. It was hard to spread the word because doctors can’t give any information on patients who have it, so I went to the newspaper and they printed an article about ITP, and I had 19 people at my first meeting! It was awesome to be able to help others understand their disease and to give them brochures that PDSA provides. [In 2019], I held [my first] fundraiser for ITP called Putting 4 Platelets; 39 people came, and the event raised over $1000. We were able to host the event again in 2022, and raised over $1600!

I’m an ITP Warrior and proud of it!

 

 

 

 

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