Jake: Defying Deep Vein Thrombosis

Jake was only 14 when he was diagnosed with deep vein thrombosis (DVT). His diagnosis was not only rare, but also mysterious, as most people diagnosed with DVT are over the age of 40.

A rare hematology diagnosis

In eighth grade, Jake was a straight A student and a multi-sport athlete. From lacrosse to track, cross country and skiing, Jake did it all. But during his spring season, he started feeling pain in his right hip that got so bad, he couldn’t walk. He began using crutches and thought it might be a problem with his hip flexor or that he was chronically dehydrated. After a couple of weeks, he went to urgent care and then to a sports medicine doctor who finally gave him an MRI.

“The tech was wide eyed,” Jeff, Jake’s dad, recalls. “Within five minutes, we were sent to the Children’s Hospital Colorado’s emergency department. It was the craziest rainstorm, and even with the emergency department (ED) being so full, they were so quick to get us in.”

In our Anschutz Medical Campus ED, experts diagnosed Jake with DVT, a serious condition in which blood clots form in deep veins and can cause pain. These clots can also break off and travel to the brain, lungs or other parts of the body and lead to other life-threatening conditions. While it can happen for many reasons, DVT causes include long periods of inactivity, which was odd, as Jake was anything but inactive.

Jake was admitted to the Center for Cancer and Blood Disorders for treatment. First, pediatric radiologist Vaz Zavaletta, MD, and pediatric hematologist Beth Warren, MD, used an inferior vena cava filter in his largest vein to catch any large blood clots moving to Jake’s brain or lungs. He then had a thrombolysis, using blood clot-busting drugs to dissolve the clots, and a thrombectomy, in which a catheter is threaded through his neck and behind his legs to remove clots.

“They removed four feet of blood clots from his stomach to his knees,” says Jeff.

Thriving with deep vein thrombosis

After these procedures, Jake was stable but needed to spend a few days in the intensive care unit (ICU). His body was also forming collateral veins, or alternative routes, for blood to travel around the clots, ensuring that his body was still getting circulation. But just as quickly as Jake began to heal, the clots returned.

The team used genetic testing to determine why clots continued to be an issue for Jake and found Factor V Leiden, an inherited disorder that makes Jake’s blood more likely to clot. Jake was discharged, but over the next few months, he went through three rounds of procedures while taking blood thinning medications at home. He also got a stent in his pelvis to relieve the clotting in his iliac vein. He went straight back to school and into sports — even with the stent.

“Although it’s never in the rearview mirror, we have a lot to thank Children’s Hospital Colorado, Dr. Z, Dr. Warren and the entire team for,” Jeff says.

While Jake will always have clotting and will manage his condition with medications and possible surgeries, that doesn’t stop him from doing — well — anything. Now, Jake is 17 and enjoying his junior year of high school. He plays golf and basketball, and he loves to ski with his family. And he’s looking forward to playing college intramurals in the next few years. Throughout his experience, Jeff and Amy, Jake’s mom, use the word “advocate” to describe their experience. Advocate for care, advocate for your child and advocate to help other families.

“We want to help another family from going through this,” Jeff says. “Listen to your gut and use your resources.”

Learn more about Stop The Clot, a public education campaign that displays information aimed at saving lives from dangerous blood clots.