Wendy Villars

When it comes to health issues, 53-year-old Wendy Villars of Wisconsin Rapids, Wis., is a firm believer in listening to your body and trusting your instincts.

"I have Crohn's disease, and three years ago had Crohn's surgery," says Wendy. "And from my hospital stay forward, I kept saying, 'Something else is wrong.'"

"You're Borderline"

Wendy had always exercised regularly, but now when she walked she experienced shortness of breath, and wasn't able to go more than 20 feet without stopping and coughing. Her symptoms didn't improve, so she went to an area clinic and had a series of respiratory tests. The tests confirmed her belief that something was wrong and she was categorized as "borderline."

"But it was never clear to me what 'borderline' meant, other than it was serious," says Wendy. "They didn't explain it further or pursue it."

Wendy was frustrated, but refused to give up, and was willing to try almost anything. Her local doctor gave her numerous medications, and finally, she took an anxiety prescription — even though she had never felt anxious — but still nothing improved. Finally, in December 2004, she found herself in urgent care for severe chest pains. Her electrocardiogram (ECG) ruled out a heart attack, but still no one could pinpoint the source of her problem.

Finally Diagnosed

"Then my luck changed," says Wendy. "There was a brand new doctor in Wisconsin Rapids, and fortunately for me, he had studied pulmonary hypertension, which was my eventual diagnosis."

Pulmonary arterial hypertension (PAH) is a type of high blood pressure that affects only the arteries in the lungs. It begins when the lungs' tiny arteries narrow or become blocked. This causes increased resistance to blood flow in the lungs, which in turn raises pressure within the pulmonary arteries. As the pressure builds, the heart's right ventricle must work harder to pump blood through the lungs, eventually causing the heart muscle to weaken. (Sometimes PAH can be linked to another condition, but for Wendy, there was no connection to her Crohn's disease or another underlying cause.)

Wendy visited another area clinic, where doctors determined her condition was severe enough that she should seek treatment at a larger facility and recommended that she go to Mayo Clinic. Mayo Clinic has extensive experience in diagnosing and treating people affected by pulmonary hypertension and is a world leader in research on new treatment approaches.

New Monitoring Device Offers Another Option

At Mayo, Wendy met with Michael McGoon, M.D., who ran further tests, confirming the earlier diagnoses. Several treatment options were discussed, including participation in a new study using an investigational patient management device called the Chronicle.

The Chronicle is implanted in the body under the collarbone and is similar to a pacemaker because it allows the physician to monitor the patient remotely (the patient calls in to transmit data); however, it is unique because it offers 24-hour monitoring of numerous vital signs, such as measuring the motion of the body, heartbeat, even gauging how the right side of the heart is contracting.

"It is an amazing device," says Dr. McGoon. "Usually we can only estimate how things are working. But here we can actually take minute-to-minute readings and see if a medication is working. This also means, if something isn't working, we can try new things quicker."

Something Wendy appreciated when the Chronicle was first discussed was the way the study was presented to her. "Dr. McGoon made it clear that this was a choice — not a suggestion," she says. "He truly wanted me to pick what was right for me."

It didn't take long for Wendy to make her decision.

"On the drive home, it really hit me how serious this is," says Wendy. "But at the same time I realized that I can help others by participating and using this device. If they can learn something from all of this, and if I can help others, I want to do it."

Before 1996, No Treatment Options Available

When Wendy began treatment at Mayo and her condition was critical, she called in daily to Dr. McGoon's nurse, Cathy Severson, to talk about her condition and transmit data.

"To me, it felt like I was her only patient and that she was just sitting by the phone, waiting for me to call," says Wendy. "After a few months, I called in every three days, then once a week. Both Cathy and Dr. McGoon are wonderful people, and the level of care is so much different at Mayo than anywhere I had ever experienced — it's superb. I never feel rushed, and always feel like I have everyone's full attention."

Wendy has made small steps forward since her first clinic visit. She used to spend nearly all her time in a bed or a chair, but now feels less fatigued and can participate more. Her shortness of breath is less severe, and recently, she felt well enough to attend a wedding at nearby Rib Mountain.

"Although Wendy hasn't dramatically improved, we don't know what would have happened had she not been treated," says Dr. McGoon. "The good news is that we now have options. Before 1996, there was no medical treatment for this illness, but now there are five FDA-approved medications we can use and there are numerous studies. Research is growing."

Positive Attitude, Family Support Contribute to Better Health

Wendy would prefer not to laugh, since it generally triggers coughing, yet she can't help but chuckle when talking about Viagra, a drug originally formulated to treat male impotence, and one of her current medications. The drug was approved in May 2005 by the FDA to treat PAH, and Wendy began taking it as soon as it was approved.

"We try as much as possible to keep a positive outlook on all of this, and have gotten some laughs out of reading the label about the effects and side effects of the Viagra," says Wendy.

According to Dr. McGoon, Wendy's positive outlook and inner strength are as key to her health as her treatments and medications.

"From the moment she walked into the office, I knew she was going to do her best to make herself better," says Dr. McGoon. "Wendy is friendly, vivacious and strong-willed.
Sometimes, before I even get a chance to greet her, she asks, 'How are you, doctor?'"

Wendy has been fortunate to have a close, supportive family which also contributes to her positive outlook on life: she has been married to husband Michael for 27 years, has three adult children who all live in Wisconsin, and Wendy's parents, who are in their 80s, also live nearby.

"My mother recently spent two days washing windows at my house," says Wendy. "Her way of living is to care for other people. I admire her and I've learned from that." Wendy also notes that her mother is a breast cancer survivor, and has been cancer-free for five years.

Transplant Possible

"My heart continues to overwork," says Wendy, "And now I'm dealing with the possibility of a transplant. A fourth of each lung is functioning, and I'm always behind in oxygen."

Wendy says she will know soon whether she will qualify for either a heart-lung or double-lung transplant.

"But no matter what happens, I have every belief that I will beat the odds," says Wendy. "You have to believe that it doesn't matter what is thrown at you — you will beat the odds. And it helps to be treated at Mayo. Mayo is a facility for hope and I feel like I am at the best place I can be."