“We stood up to ITP!”

Living a full, active life when you have ITP can seem difficult—and, some might say, impossible! But Diana and John are here to assure you it’s absolutely doable. Read on for their best tips for living well with ITP.
By Kathleen Engel

“Take the lead in your care!”
Diana DiMeo lives in Singer Island, FL, with her husband, Gordon. “I don’t call ITP a disease—I call it a pain in the butt,” she says. Since her 2010 diagnosis, Diana, a retired retail consultant with IBM, has tried a number of treatments. “The medication I take now is a daily pill—and it’s working!”

Don’t give up your quest for remission. “I’ve been hospitalized once for ITP—and I never want to do that again,” says Diana. Her current therapy keeps her platelet levels at around 70,000, but she continues to try other things in the hope of putting her ITP in remission, including acupuncture, Reiki (energy healing) and Chinese herbs. “If ITP stops what I’m doing, there’s no reason to get up in the morning. That’s why I keep searching for an answer.”

Open up to your doctor. When Diana was frustrated with her hematologist last year, she wrote him a long letter, spelling out her concerns, but assuring him that she’d like him to be part of her healthcare team and hoped they could continue to work together. “It was a difficult thing for me to do, but it changed our relationship,” she says. “After reading it, he started listening more. Writing the letter [instead of confronting him in the office] gave him time to consider what I was saying.”

Exercise and stay active! “I honestly believe that because I’m active and I don’t ‘give in,’ it helps,” says Diana. “I go to the gym three or four days a week, do a lot of landscaping and do volunteer work almost full-time!” She takes classes at her gym, including kickboxing, Zumba, yoga and strength-training to music.

Travel safely. Before taking a dream trip to Croatia last year, Diana took some precautions: “I had a cold and I know what that can do to platelets, so I took a Z-pack [antibiotics], a dose of dexamethasone in case I’d need a platelet boost, and some vitamin B-12 [for energy].” Researching the hospitals in Croatia where she could get a blood test if she needed one, she was able to travel with peace of mind: “We spent a week on a sailboat and two on land, going everywhere—it was phenomenal!”

Consider a new treatment. “I was managing my ITP with a medication that required a weekly injection at my doctor’s office,” says Diana. Not only was that inconvenient, she adds, it simply wasn’t viable with her three-week trip to Croatia on the horizon. So she asked her doctor for a new treatment. “It’s a pill I take once a day,” says Diana.

“Keep living!”
John Colgan lives in Phoenix, AZ, with his wife, Rebecca. John had a splenectomy, which put his ITP in remission, shortly after his diagnosis in 1982. He relapsed in 2010 and eventually conquered the depression that followed. At last year’s PDSA conference, he reports, “I stood up in front of 300 people and told my story.”

Keep circulating. “When my ITP relapsed, I basically quit living,” says John, who would bruise from wearing a seat belt and bleed for days after a dog scratch. “I stopped doing everything, I just stayed home and got super depressed.” Therapy and his wife, Rebecca, helped John see that “ITP is not worth giving up your life for. I’ve learned I can’t do everything, but I can still have a life.”

Reduce stress with grounding. In therapy, John learned this stress-reducing technique (sometimes referred to as “earthing” and usually performed outdoors, with bare feet), which involves connecting to the earth’s energy. “I sit with my feet flat on the floor, feel myself breathe and ask, What am I here for? I do this periodically—and when I feel like I’m losing it, up to three times a day.”

Focus on how you feel. “If you’re not bleeding, who cares about your numbers?” says John. “Focus on today—not on the past or the future, and not things you can’t control. Why add stress to your life?”

Try every treatment that you can. “There’s no one recipe that works,” says John. “I’m about to try them all over again!” While trying to find the ITP therapy that’s right for you, keep a positive attitude, he urges. “If it works, you’re hopefully good for a good long time, and maybe the rest of your life.”

Guard your health. “Whenever my body puts out more antibodies to fight something, it seems to eat my platelets,” says John. “So I get a flu shot every year and a pneumonia shot every five years. I try to eat better—more salads, less red meat, more fish and chicken. I wash my hands more often and keep cuts and scrapes clean so they don’t get infected. And I try to avoid big rooms where there are lots of people.”

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