Complex medical issues may require more input than your doctor can provide.
We tend to think of our doctor as having all the answers. We expect that he or she will know what’s wrong with us and know how to fix it. We expect this of our doctor, after all. We sometimes forget that science is always evolving, but often not as definitively as we’d like.
“For many medical disorders, there may not be an absolute, clear treatment,” says Dr. Robert D. Brown, Jr., chair of the department of neurology at the Mayo Clinic in Rochester, Minn.
It’s disorders like these that Mayo specializes in. “Patients who just don’t have an answer,” says Brown. “They have complex medical symptoms and signs and examination findings. But for whatever reason, the specific culprit that has led to those symptoms and signs and the best treatment, has just not been defined.”
This can be an incredibly challenging situation to face. No one knows that better than 52-year-old, Chicago area triathlete Kevin Lue.
In January of 2009, Lue and his wife were training for a spring marathon. On a run by himself one day, Lue lost consciousness. “[I] didn’t even have a chance to put my hands down,” he says. “[I] hit my forehead and scraped the back of my hands, that’s how quick I went out.”
A passerby helped Lue get home, and he and his wife went to the hospital, where the doctors performed a stress test.
Connected to monitors, Lue ran on a treadmill so the doctors could watch his heart’s activity. Nothing seemed out of the ordinary. In fact, Lue was in such good physical condition that he stayed on the treadmill longer than usually required in an effort to push his heart toward the rate it would be beating during a 5K. But when he began to feel dizzy, he got off the treadmill to lie down and flat-lined.
Lue’s heart began beating again on its own before the doctors had the chance to revive him. They determined Lue must have what’s known as third-degree heart block, meaning the electrical signals from the top of the heart weren’t getting down to the bottom, so the lower two ventricles that push the blood through the body and through the lungs weren’t doing anything. In mid-January, doctors implanted a pacemaker in an effort to solve Lue’s problems.
But it didn’t work. “I started having issues,” says Lue.
He developed a cough, restless leg syndrome, bloating, his color turned a sickly green, and he couldn’t sleep or eat. Doctors tried to fix the symptoms and began looking for a virus or some other sign of what could be giving Lue such trouble.
Meanwhile Lue became more and more fatigued. “Eventually I couldn’t walk up my steps without being out of breath,” he says.
By the end of that March, frustrated by making fruitless trips between doctors and specialists, Lue and his wife decided to go to the Mayo Clinic.
“We’re proud of the fact that we see about 6,000 Chicago-area patients each year,” Brown said on the phone from Rochester. “What might be an extended evaluation in some settings can be done in a very short period of time because of the nature of the coordination [among] all of the providers,” he explains. “The driver is how quickly [we] can bring that team together in a very patient-focused environment.”
Lue says he applied online one evening, and Mayo called him the next morning. They wanted to see him right away. “We had an itinerary that started at 6 in the morning and went until about 2:30 in the afternoon,” says Lue of his first day at the Mayo Clinic in Rochester. That afternoon the doctors told Lue he had a very serious heart condition, but they weren’t sure yet what it was. “Head over to cardio,”
Lue says he was told; “don’t even go to Admissions; they know you’re coming.”
“My heart was just doing flips,” says Lue. “It would stop beating for three or four beats and then it’d beat fine for an hour; then it would throw in 20 extra beats.” It took about a week, but eventually the doctors came up with the diagnosis: a very rare autoimmune disease called giant cell myocarditis.
“Basically, my immune system decided that my heart wasn’t supposed to be there and started attacking it,” says Lue.
The doctors knew how serious this was. “They told us not to look it up on the Internet,” Lue says. They explained to him that they would need to implant an LVAD, a type of heart pump. Lue was told he’d need the pump to help circulate the blood when his heart failed. The doctors knew it would fail, and it was likely that he wouldn’t get a transplant before that happened.
Although this diagnosis was extremely serious, Lue finally knew what was wrong and what would need to be done to fix it. The doctors at Mayo sent Lue home to wait for a donor, but after about a month, under the continued assault from his immune system, the right side of his heart had become nearly all scar tissue. The valves weren’t working, and the LVAD pump that is supposed to act as an assistance device was doing nearly all the work. Mayo asked him to stay with them in Rochester at the transplant house so they could keep an eye on him. Seven months later, they called with a match.
After Lue’s successful heart transplant, he was able to get back to some of the activities he loves; running, biking and swimming. Unfortunately, today, running is on hold due to a hip replacement necessitated by the steroids that were part of keeping him alive before the transplant.
“People always think I had a heart attack,” Lue says. “Really, there was nothing wrong with my heart.” Before his immune system destroyed it, Lue had a very strong heart, kept in shape by his athleticism. He suspects that his once-healthy heart was the thing that kept him alive and also tripped up the doctors in Chicago. “Nobody wanted to contradict the cardiologist [who] had already looked at my heart and checked it out,” he says.
At Mayo, Lue says they took into consideration all of the records that Lue and his wife had kept, and the information from the Chicago doctors. “Then,” Lue says, “they started from scratch.” And he couldn’t be more grateful. After all, Lue is alive today because they did.
Published in Chicago Health Summer/Fall 2012