Margaret Shepard (@margieshepard) published a blog post · November 23rd, 2012
Alvin Haworth: Trust Yourself —and Keep Asking Questions
Sixty five-year-old Alvin Haworth, a retired United States Navy pilot and operations analyst, was enjoying an active retirement in Jupiter, Florida. He worked first as an aircraft engine manufacturer analyst and, later, as an instructor at a local community college teaching calculus and statistics.
Used to rigorous physical activity during his service in the Navy, Alvin continued to value exercise and health in retirement, and kept fit by jogging and participating in local races. During his 24 years of military service, he had received regular, comprehensive physical exams, which confirmed that he was in excellent health. Occasionally a slight heart murmur was detected, but at Alvin's next three or four exams, nothing was found, so no action was taken.
Noticing a "Lag" in His System
One afternoon in 1999, when Alvin was out jogging, as he did daily, something unusual began to happen.
"When I would first start to run, I would feel like I was waiting for my blood to catch up to my head. I'd stop to steady myself, but then I'd feel normal and I'd run on," says Alvin. "Later, when I accelerated while running, I would again notice a 'lag' in my system."
At subsequent visits to the Veteran's Administration Medical Center for routine physical exams, Alvin asked the doctor to look into the problem. There was no obvious cause, and over the next four years, doctors performed various tests to determine the cause of Alvin's symptoms, but nothing was found. Alvin kept on with his normal teaching schedule and exercise routine.
Requesting More Tests
Still, Alvin sensed something wasn't right and decided to be more aggressive about finding answers. In 2003, he requested more tests and had an electrocardiogram. The results were unusual enough to warrant a second electrocardiogram.
"After the second electrocardiogram, my doctor contacted me, and told me I had a serious heart problem and needed immediate surgery. He also asked me to get a second opinion," says Alvin.
The surprise of his doctor's recommendation left Alvin in shock, and he did not react immediately. When his doctor called three days later asking if he had gotten the second opinion, Alvin admitted that he hadn't, and was told how critical his situation might be.
"I knew a cardiologist through my teaching work, and asked if he could fit me into his schedule quickly and give me an examination, which he did," says Alvin. The cardiologist concurred with Alvin's doctor and scheduled an appointment for Alvin at Mayo Clinic in Rochester, Minnesota.
Diagnosed with Hypertrophic Cardiomyopathy
When Steve Ommen, M.D., a cardiologist at Mayo Clinic saw Alvin's test results, he determined that Alvin had hypertrophic cardiomyopathy (HCM) and advised him to visit Mayo Clinic's hypertrophic cardiomyopathy clinic without delay.
Mayo Clinic's hypertrophic cardiomyopathy clinic is comprised of six cardiologists, two surgeons, and two nurses, and is one of the top facilities in the world for treating this condition. Approximately 300-400 patients are treated at the clinic each year. HCM, an abnormal thickening of the heart muscle, is the most common genetic cardiovascular disease in the United States. It affects one in 500 people, but only in the past several years has awareness of this disease increased, leading to better recognition and diagnosis.
"At Alvin's age, doctors tend to look for other things like coronary artery disease or valve issues when they suspect heart problems," says Dr. Ommen. "While the average age of a patient that comes to Mayo with HCM is between 20 and 49, we have seen patients at any age."
At Mayo Clinic: An Ambitious Schedule
When Alvin flew to Rochester for his surgery on October 20, 2003, he arrived on a Monday, had a series of tests on Tuesday, talked with Dr. Ommen to learn more about his condition on Wednesday, and had surgery on Thursday.
"I've never been able to get that many tests in that short a time, and they stayed on schedule — it was an ambitious schedule in order to get me into surgery," says Alvin. "Each section of the Mayo Clinic had results from my tests by the time I met with the people who needed to review them. The organization and interplay between different departments is so excellent. I kept wondering, 'Why don't all clinics model this system?'"
Surgery a Success
After reviewing Alvin's test results, HCM nurse Doug Kocer, and Dr. Ommen helped him understand the nature of HCM and how it was causing impaired heart function. Then they discussed the pros and cons of several treatment choices. After this review, Dr. Ommen recommended that a cardiac operation called septal myectomy was likely Alvin's best hope for definitive relief of symptoms, and referred him to Hartzell Schaff, M.D., one of the cardiac surgeons on the Mayo Clinic HCM team.
The next day, Dr. Schaff performed the myectomy operation, carefully removing a small portion of the heart muscle that was impairing normal blood flow through Alvin's heart. Near the completion of the operation, several tests were completed in the operating room to ensure that the desired results were achieved.
Alvin's surgery went well — so well, in fact, that when he woke from the operation with only minor muscle aches, he assumed he had been given a high-dose painkiller, though he had not.
"It didn't hurt," says Alvin. "It never did."
Although surgery went well, Drs. Ommen and Schaff advised Alvin to stay in the hospital a few extra days after noticing he was experiencing atrial fibrillation, a disturbance in the heart's rhythm. The team monitored the symptoms, and prescribed medication to treat the problem. Alvin was then ready to return home.
Returning to a Normal Routine
More than four years after his surgery and treatment at Mayo Clinic, Alvin, now 74, continues to enjoy good health and a full life. He has had to give up jogging because of mitral valve prolapse, a separate problem, but Alvin walks faithfully one to two miles each day.
Dr. Ommen says most patients who come to Mayo Clinic's hypertrophic cardiomyopathy clinic are able to return their normal routine.
"HCM is relatively infrequent and there are a lot of misconceptions about it. At one time, it was felt that the diagnosis of HCM meant that patient was going to die young or be physically incapacitated by severe symptoms," says Dr. Ommen. "What we know now is that most who have it, and have it treated appropriately, can go on to lead a normal quality of life and have a normal life span. While some people with HCM do develop symptoms like shortness of breath and lightheadedness when they exert themselves, there are various therapies — medications as the first course and then an operation if symptoms are still problematic — that can alleviate these problems."
What has Alvin taken away from the experience, and what advice does he give to others who may suspect they have a medical issue — but are unsure as to what it might be?
"If you have worrisome symptoms, you need to find answers — you are your own best judge of the condition of your body," he says. "It is just a question of finding out why you are having certain symptoms, then finding the best place to receive treatment."