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For a few years, John (Mac) McIntire had been having periodic shortness of breath. As someone who worked out pretty regularly, McIntire thought he was just getting older, even though he was only 43. But in March 2020, when he had prolonged dizziness walking from the Metro to his office, he went to Immediate Care at Virginia Hospital Center (VHC).
After doing an EKG, the physician sent him to VHC’s Emergency Department where he was given a stress test. Eric Thorn, MD, FACC, VHC Physician Group-Cardiology, was called in immediately to consult with McIntire.
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Dr. Thorn diagnosed McIntire with hypertrophic cardiomyopathy, a rare genetic condition in which the inner wall of the heart—the septum—enlarges over time and obstructs the flow of blood from the left ventricle into the aorta. In addition to shortness of breath, chest pain and dizziness, this condition carries a risk for sudden cardiac death.
According to Dr. Thorn, about 1 in 500 people have hypertrophic cardiomyopathy, across all nations. Research by Cleveland Clinic suggests that an estimated 600,000 to 1.5 million people in the U.S. have the disease. Mayo Clinic Cardiologist Steve Ommen, MD, states, "In the United States, that means approximately 500,000 have the disease and most who may never know it."
Experts at Mayo Clinic note that the condition is usually passed down through families. If you have a parent with hypertrophic cardiomyopathy, you have a 50 percent chance of having the genetic mutation for the disease. However, most people with the condition have no symptoms and experience no significant problems.
“Evidently I’ve had this condition my whole life, but it didn’t become severe until I was older,” says McIntire.
“Shortness of breath during exercise should not happen simply because you’re getting older or are less active,” says Dr. Thorn. “As you exercise more and build up endurance, your breathing should improve. If it’s getting worse, that should be concerning and you should be checked out by your doctor.”
“As a result of the diagnosis, first we put Mac on medications to slow his heart and lower his blood pressure,” says Dr. Thorn. McIntire started to feel better during the spring and summer, but then his symptoms got worse. “I was in the process of building a ‘rainbow house’ for my daughter, a place where she could concentrate during her remote learning classes. I would have to stop and rest pretty often,” McIntire recalls.
Dr. Thorn explained to McIntire that the medications were losing their effectiveness and he might need to have open heart surgery to reduce the size of the septum. Dr. Thorn recommended that he conduct an eConsult with colleagues at Mayo Clinic on Mac’s behalf. “With Mayo Clinic I’m confident we are getting advice from the best. Mac needed a highly specialized procedure, one that is done infrequently at most medical centers, but Mayo Clinic does hundreds every year.”
VHC has been part of the Mayo Clinic Care Network since 2015. That connection provides our doctors with access to specialists at Mayo Clinic, ranked the No. 1 hospital by U.S. News & World Report. Mac’s records were uploaded and reviewed by Rick A. Nishimura, MD, a cardiologist specializing in hypertrophic cardiomyopathy. When the eConsult came back, Dr. Nishimura said that surgery was likely the next step and recommended that Mac come to Mayo Clinic for an evaluation.
“Dr. Thorne told me about the eConsult and said Dr. Nishimura would call me,” McIntire says. “He called about 15 minutes later. I was really impressed with the swift work between VHC and Mayo Clinic.”
“We have an ongoing relationship with VHC through the care network,” says Dr. Nishimura. “VHC physicians contact us directly when they want to refer their patients to us for complex care. I had done a number of eConsults previously with Dr. Thorn. When he contacted me about Mac, I knew he needed to be seen right away.”
At Mayo Clinic in Rochester, Minnesota, McIntire met Dr. Nishimura and Hartzell Schaff, MD, cardiovascular surgeon. Testing showed McIntire’s exercise capacity was only at 50 percent, compared to someone of his age and gender. Dr. Nishimura explained that his only treatment options were a non-invasive procedure (alcohol septal ablation), where alcohol is injected to destroy the thickened heart muscle, or open heart, septal myectomy surgery. In a septal myectomy, a small amount of the thickened septal wall is shaved to eliminate the obstruction of blood flow.
“This is the type of procedure that needs to be done by a very experienced surgeon,” says Dr. Nishimura. “The key is knowing precisely how much muscle to remove. Not enough and you haven’t solved the problem. Too much and you could destroy the heart.”
Every year, 200 to 250 patients come from all over the world to have septal myectomy surgery at Mayo Clinic. Dr. Schaff performs 70 to 80 percent of all these procedures. “In our experience, surgery is the most reliable and complete way to get rid of the obstruction and improve blood flow,” says Dr. Schaff.
Through shared decision making with Dr. Nishimura, McIntire chose to have surgery for the best possible outcome. McIntire scheduled his surgery for Thanksgiving week, then returned home to get organized. McIntire, his wife Ixi Barrios Blandon and daughter Ixel returned to Rochester and settled into a B&B near Mayo Clinic. “I was so glad Dr. Thorn got me into Mayo Clinic,” he says. “My surgery went amazingly well."
“The heart is better the day after surgery. Our expected outcome from this surgery is to spend five days or so recovering in the hospital. After discharge, there are no restrictions on exercise, just for heavy lifting. Once they recover from their incision, most patients recognize improvement in their breathing and exercise capacity,” says Dr. Schaff.
“For us at Mayo Clinic, it’s reassuring to know that Mac would receive excellent follow-up care at VHC, close to home, without having to travel back and forth to Minnesota,” says Dr. Nishimura.
“For all of 2020, I was worried about my heart condition,” McIntire says. “I feel so much better. Now I’m no longer afraid of dying.”
Potential warning signs of an underlying heart condition
When any of these symptoms are more than mild or persistent, they should be checked out by your physician.
- Shortness of breath that lasts more than a few minutes
- Dizziness when exercising
- Chest pain with physical exertion
- Unexplained weight gain and swelling of the legs along with shortness can indicate congestive heart failure
When your heart is telling you to call 911
Seek emergency care if any of the following symptoms are severe or last for more than a few minutes:
- Rapid or irregular heartbeat
- Difficulty breathing
- Chest pain
From prevention to diagnosis to treatment, Virginia Hospital Center provides comprehensive heart health care. Click here to learn more.