“Life is great!”

ITP doesn’t stop Aandrea Hays from living each day to the fullest!

If it’s 6:30 am on a weekday, you’ll find Aandrea Hays at work—at an Albuquerque brewery that’s a 30-minute drive from her home in Los Lunas, NM. That’s when her shift as a lab tech starts—in some months, before the sunrise. Not that Aandrea’s complaining; after all, her 2:30 pm quitting time leaves more room in the day to do other things. Like play with her Chihuahuas, Tweak and Bitty, before preparing dinner for her and her husband, William. “I really enjoy cooking,” says Aandrea. “All kinds of pasta, soups…but my enchiladas are my husband’s favorite!”

Aandrea’s active days are no problem now. But seven years ago, when her platelets fell to 13,000 and she was diagnosed with ITP, life didn’t allow for too many hobbies. Whipping up a Mexican dinner? Not likely. For years, a frustrating ITP cycle consumed her life: platelet crash, followed by treatment, pause, repeat. “I was exhausted all the time,” says Aandrea. While steroids could bring her up to 400,000, “I couldn’t figure out how to sleep, I gained weight and developed horrible acne. But none of that compares to the emotional outbursts I’d have. Such angry outbursts! I’d ask myself, Why am I so mad?”

“I stayed the course—and found remission!”
Aandrea persevered, trying new treatments, dosages and combinations of treatments, and going for blood work to check her platelets—sometimes twice a week. Throughout, she wracked her brain to figure out why on earth her platelets were tanking. She spotted some connections, noting, “My father’s adamant that when I’m stressed out, I crash. He linked my platelet drops with college finals and trying to find a job—things that are more than my normal daily stress.”

In 2015, Aandrea began a new medication regimen but discussed a “plan B” with her hematologist: In the event the therapy failed, they agreed she’d undergo a splenectomy, surgery to remove the spleen, the organ that traps platelets and produces anti-platelet antibodies. She even got the vaccinations she’d need in case of surgery. “They wanted me to be prepared,” she explains.

Fortunately, the new regimen was successful! As for plan B, that was scrapped. At last, Aandrea found the treatment that helped her break the frustrating cycle that had bogged her down for years. In fact, the medication brought her platelets to a safe level—and they’ve stayed there ever since! Best of all, it’s given her priceless peace of mind—whether she’s playing with new recipes, cheering on the Raiders or enjoying “really bad reality TV,” ITP is no longer stealing her energy or spoiling her fun!

Here, the tips that keep Aandrea thriving—ask your healthcare provider if they can help you, too!
1. Watch for signs.
Aandrea calls fatigue her “best indicator” that her platelet levels are falling. “But first, I try to figure out if it’s ITP-related or if I’m just feeling lazy,” she says. “If I’m super tired despite having had a good night’s sleep, that’s when I know I need to get my platelets checked. If it is my ITP fatigue, the only thing that really helps is a higher platelet count!”

2. Live by how you feel—not by the number.
It took a while before Aandrea discovered she could live with a platelet count of 30,000. “I did my own research and learned how many people are sitting at that number,” she says. “Some people drop and drop until they have no platelets. But I don’t have any symptoms at 30—no petechiae, purpura or nosebleeds. I can live my life just fine!”

3. Prepare yourself for platelet drops.
“Even without ITP symptoms, it’s important to be ready,” says Aandrea. “I keep a hospital bag packed with my favorite sweatpants and a hoodie, my shampoo and other things, so my husband won’t have to panic if I have to be admitted.” It removes some of the stress of going into the hospital.

4. Guard against infection.
“As soon as I get an infection, my entire immune system goes down and I’m more likely to have a platelet crash,” says Aandrea. “So I’m a compulsive hand-washer, and I’m big on getting my flu shot. I also have a face mask I wear if my husband, who’s a teacher, comes home coughing. And I always have my disinfectant spray ready!”

5. Tune into your body.
When she can, Aandrea exercises. “I run and use weights. I enjoy it—it makes me feel better and healthier overall.” But she also rests when she feels the need. “If I’m feeling especially exhausted, I might sleep for 15 hours!”

6. Network with others with ITP.
“I’ve been to three PDSA annual conferences,” says Aandrea, whose family attended with her. “We’ve learned about ITP together. Hearing others talk about ITP fatigue, it’s nice to be able to say I feel that, too and to have that support. And it helped my family understand how ITP fatigue affects me.”

7. Lose the guilt.
“When I had platelet crashes, people would ask me, What happened? What changed? What did you do? I finally realized: I am not causing my ITP—it’s just the disease. That has changed my outlook! I know now that a platelet crash is not my fault,” says Aandrea. “I’m not so hard on myself anymore!”

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