When Claire Cafaro set an appointment at her primary care office, it was for a cold.
Thankfully, this was back in January, before cases of COVID-19 arrived in Colorado. So, Cafaro wasn’t worried about the new coronavirus. But the now 87-year-old had been “dragging” more than normal and figured some antibiotics might do the trick.
“I couldn’t do household cleaning anymore, and I definitely wasn’t vacuuming,” she explained. “I had reached the point, I’d get up and eat breakfast and felt like I had to get back in bed and rest from that.”
“Since she came in for a cold, I wasn’t expecting to have this conversation with her,” Loffler said. “But I listened to her heart and lungs and noticed her aortic stenosis.”
Cafaro knew about her heart valve disease. In 2017, she was diagnosed with moderate aortic stenosis, a common issue where the opening of the aortic valve narrows, restricting the blood flow in the heart. It’s recommended that patients see their cardiologist for regular monitoring because once aortic stenosis becomes severe and symptoms get worse, it can be life-threatening.
“Aortic stenosis is a mechanical issue — it doesn’t go away until it is fixed,” said Dr. Brad Oldemeyer, an interventional cardiologist with UCHealth Heart and Vascular Center – Medical Center of the Rockies. “It is different with every person, but once it begins to change, it changes quickly. It leads to congestive heart failure and death (at a rate of 50% within two years).”
Severe aortic stenosis
Loffler, who had spent several years in a heart valve clinic and cardiac electrophysiology clinic before practicing with UCHealth, knew that patients — no matter how intelligent — often struggle with the complexity of cardiac diagnosis and treatment options.
“What’s hard about medicine these days is it has become so complex,” Loffler explained. “It’s routine for providers, but even for very educated patients, these things are foreign. Patients need to hear things three or four times for it to sink in and make sense; make it a personal understanding. That’s why it’s crucial to have these regular visits with your doctors and have these conversations.”
Cafaro knew she was supposed to be following up with her cardiologist regularly, but she had put the visits on the back burner.
“It was wishful thinking, but I thought it might go away. I just thought I’m old, and this is how old people get,” she said. “I was ignoring that I had aortic stenosis — figured I’d let nature takes its course.”
Nature had taken its course and in the two years since Cafaro’s diagnosis, her stenosis had gotten considerably worse.
“She wasn’t feeling well in general,” Loffler recalled. “When we question patients, we have to question them a few different ways. She’d say she was an active person — and she looked like an active person — but when I asked her if she was doing all the activities she liked doing, she said no because she wasn’t feeling well enough to do them.”
“I’d be taking a walk and I couldn’t go that far, and it was a big effort,” Cafaro explained. “I had shortness of breath. All these things I was just attributing to old age but it wasn’t that at all.”
Signs and symptoms of severe aortic stenosis
Many people with aortic stenosis don’t experience noticeable symptoms until the blood flow becomes greatly reduced. At that time, symptoms can include:
- Chest pain
- Rapid, fluttering heartbeat
- Trouble breathing or feeling short of breath
- Feeling dizzy or light-headed, even fainting
- Difficulty walking short distances
- Swollen ankles or feet
- Difficulty sleeping or needing to sleep sitting up
- A decline in activity level or reduced ability to do normal activities
Loffler insisted Cafaro go in for an echocardiogram, a type of ultrasound of the heart, to confirm the severity of the stenosis, and Loffler explained treatment options to her.
“I think Claire was worried she’d have to have this huge surgery or die from it — she didn’t want either,” Loffler said. “But I explained the less-invasive approach and easier recovery.”
The less-invasive approach to severe aortic stenosis
The less-invasive approach called TAVR, or transcatheter aortic heart valve replacement, allows doctors to repair the damaged valve without replacing it.
A team of heart surgeons and interventional cardiologists work together to place a collapsible artificial valve into the heart by way of a catheter through an artery. When in position, it expands and pushes the old valve leaflets out of the way, and the tissue in the replacement valve takes over the job of regulating blood flow.
“The medical advances in terms of procedures have a huge impact in these people’s lives,” Loffler said. “I’m not sure Claire would have made the decision to go through a big surgery knowing what it entailed and the rehab to get back to what she was before. I’m thinking she may have let her heart issue go and her quality of life and end of life may have looked a lot different if she didn’t have this option.”
Knowing TAVR may be a “less-scary” option, Cafaro decided to not ignore her doctor’s advice anymore, and an echocardiogram a few days later confirmed the seriousness of that decision.
“Before the echocardiogram I could indulge in wishful thinking, but when the echo showed how far the stenosis had progressed, it was obvious I was in bad shape. At that point, everyone felt the sooner the better as far as having the TAVR procedure,” Cafaro said. “So after that, I went to Dr. (Todd) Whitsitt, and he acted rather swiftly, having me talk with Dr. Oldemeyer and (Dr. Mark) Guadagnoli about TAVR.”
Oldemeyer and Guadagnoli are part of the cardiology team at UCHealth Heart and Vascular Center – Medical Center of the Rockies, where nearly 200 TAVR procedures are performed annually. Recently, UCHealth Medical Center of the Rockies was ranked as a high performing TAVR hospital by U.S. News and World Report based on areas such as survival, volume, readmission prevention and patient experience. Hospitals that earned a high performing rating were significantly better than the national average and are among the top 15% in the country for TAVR.
“They did a very good job of explaining TAVR, so we scheduled my procedure for March 19,” Cafaro said. “Then, two days before it was to happen, I got a call canceling it because of the pandemic.”
COVID halts nonemergent procedures
With the number of COVID-19 cases rapidly escalating, hospital systems, including UCHealth, had to postpone nonemergent procedures to assure adequate personal protective equipment (masks, gowns, etc.) for staff to be able to for those patients.
“I spent over a month anxiously awaiting what the next step was going to be,” Cafaro said. “I was worried that unless I had the procedure in a timely manner, I might not live long enough to have it at all.”
Once the first surge of COVID-19 patients had subsided, hospitals once again opened their doors to more medically necessary surgeries and procedures. Cafaro was one of the first on the list.
“I got a call asking if I’d be interested in rescheduling,” she said. “Of course I was, and it was scheduled for May 12. The results were practically immediate.”
Typically, a patient arrives early in the morning for their TAVR procedure. The procedure takes about 90 minutes and several hours later, the patient is up walking to the bathroom, and within 24 hours, they’re ready to go home.
“I could tell the difference the day after I got home,” Cafaro said. “I was able to walk further and not drag as I had been before.
“The overall experience was very positive,” she continued. “I had wonderful nurses. I even wrote down all their names.”
Her nurses provided her with “interesting discussions,” she said, adding that it was nice because she wasn’t allowed visitors due to the pandemic restrictions. She was grateful for the hospital’s COVID-19 safety precautions since she and her husband had been very diligent at home to keep themselves safe.
“I was very pleased with the whole experience, and sorry I had put it off for so long,” she added.
Figuring out when aortic stenosis should be addressed?
Experts are still working to determine the best timing to for addressing aortic stenosis, and UCHealth has been part of several trials to determine if there are benefits of TAVR before symptoms arrive.
“When symptoms develop, we know it is time, but often it’s hard to diagnosis symptoms versus aging,” said Oldemeyer. “These trials are redefining our treatment algorithms.”
TAVR was approved by the FDA in 2011 but only for patients who were too high risk for open-heart surgery. The FDA later approved the procedure for moderate- and low-risk patients after trials proved it beneficial. Currently, UCHealth is participating in another TAVR trial that looks at patients who are not experiencing any symptoms from their aortic stenosis.
“What we are learning is that damage is done to the heart muscles (because of aortic stenosis) earlier than previously thought, so there may be advantages to intervening earlier,” Oldemeyer said. “Historically, we’ve treated it as if the heart damage is reversible, but that’s the question we are looking at now.”
Medical experts and researchers are certain that severe untreated aortic stenosis has a very poor survival rate.
“TAVR stops the natural progression of aortic stenosis,” Oldemeyer said. “Patients get back to normal life within a week.”
And had it not been for the coronavirus, Cafaro would have soon returned to her routine of going to the gym, swimming and enjoying classes at the senior center.
“All that’s been thrown out the window,” she said. But she has been enjoying her daily walk and her other hobbies — without the concern of her earlier diagnosis.
“I’m rereading ‘War and Peace,’” she said. “It’s a way of escaping the reality of the virus and absorbing a classic story. But I am looking forward to the day I can get back to the pool.”