“Once I was satisfied with what I knew about the On-X valve, I told my surgeon that it had to be the On-X valve, or I wasn’t going to have the surgery.”
On-X Aortic Valve Recipient: Virginia Arena
Virginia is sixty-five years old and lives in Palm Coast, Florida. She has always led an active life. She loves to dance, and in her 40’s, began a rigorous physical fitness program, including weight-training and taking various aerobic classes three to four times a week. It was during these classes that she noticed that she couldn’t keep up unless she took a thirty-second pause to catch her breath.
It only took a few seconds of time-out and she was back up again, and she contributed this as a side effect of getting older. While still maintaining a healthy fitness plan for the next ten years, she became concerned one night when she leaned over to pet her black lab and experienced shortness of breath. “It didn’t feel right; I only bent at the waist half-way,” she says.
She made an appointment with a cardiologist, knowing heart disease runs in her family. Without doing a test, his preliminary examination indicated nothing was wrong. Her blood pressure was a perfect 115/70. She made him aware that her cholesterol was a little high, but he didn’t seem concerned about the number. Her resting heart rate was in the low 70’s, and all seemed fine.
Virginia insisted that something was wrong. Her doctor then ordered an Echocardiogram and found her bicuspid aortic valve. To confirm his diagnosis, he performed a transesophageal echocardiogram (TEE). After the confirmation, the doctor told Virginia that this defect was probably congenital and his prognosis was that she would need an (AVR) aortic valve replacement in about ten to fifteen years.
He warned her that any additional symptoms could be subtle and she might not realize they are contributed to the bicuspid valve and to make sure she followed up with a cardiologist regularly.
A year later, Virginia and her husband relocated from New Jersey to Florida where she made sure she was seen by a cardiologist every three years. All the while, she was still dancing and exercising. She took Zumba and Salsa classes weekly and worked out at her local gym. She still had to stop during the classes to take breaks, a reminder of her diagnosis. Her cardiologist advised her that she would know when it was time to replace the valve. The stenosis caused by the bicuspid valve only worsens, and she would continue to feel the effects. She was advised to have yearly Echocardiograms done to track the severity of the stenosis and determine when surgery was necessary.
Virginia’s Stenosis Reaches a Critical State
In February 2016 after having a routine echocardiogram, Virginia was told that the next step was to have a cardiac catheterization to confirm the finding of the test. The next month, she had a cardiac catheterization procedure performed by her cardiologist, Dr. Domenic Marini. Her results showed the stenosis had worsened to the point where she was now in a critical state.
“It wasn’t ‘urgent,’ but it was something I could not ignore and had to pursue within the next few months. I was referred to Dr. John Holt, a cardiothoracic surgeon.”
In April 2016, she went to discuss her procedure with Dr. Holt, adamant that she did not want to take blood thinners (e.g. warfarin) for the rest of her life. She recalls reading that if a patient receives a mechanical valve, they will be required to take anticoagulants, or blood thinners. Dr. Holt explained to her that mechanical valve recipients need anticoagulant medication to reduce the risk of blood clots. At the time, the only medication Virginia was taking was a low-dose cholesterol-lowering regimen, and she was apprehensive about adding an additional medication to her daily routine.
“If I was going to have an AVR, I wanted a tissue valve since I probably would not need blood thinners. But, due to my physical composition and after many discussions with Dr. Holt, it was a mutual decision that, unfortunately, a tissue valve was not the way to go for me. I could have gotten a tissue valve but only if I underwent a very complex open-heart surgery. I crossed that option off, since it would be a very involved procedure with no guarantees.”
Virginia admits that the initial thought of being on Coumadin was very upsetting. She had read various articles about the drug, but realized that given the options presented to her, she had to make the best choice for her heart.
Introduction to the On-X Valve
Dr. Holt introduced her to the On-X valve and encouraged her to do more research on it to see how she felt about it. He explained to her that the On-X valve requires a lower dosage of blood thinners (after three months standard therapy) than other mechanical valves; due in part to the pyrolytic carbon the valve is made of. He explained that while tissue valves have a life expectancy of 10-15 years, mechanical valves can last through a patient’s lifetime.
Encouraged by the idea of having to use a lower amount of blood thinners, Virginia visited a few online blogs that were dedicated to AVR and learned that in fact, “many people were taking blood thinners and they were doing just fine. It’s the fear of the unknown that makes everything seem worse than what it is.”
Virginia also completed extensive online research on the On-X valve and compared it to other mechanical valves.
“Thinking the best information comes ‘straight from the horse’s mouth,’ I contacted the company and spoke with two individuals, on numerous occasions, who answered all of my questions via text or by phone call and made themselves readily available to answer any inquiries I might have as time went by. Once I was satisfied with what I knew about the On-X valve, I told my surgeon that it had to be the On-X valve, or I wasn’t going to have the surgery. ”
“The choice between tissue and a mechanical valve is very personal. But I’m so thrilled that I did not get the tissue valve. After having gone through this extensive surgery, I would not want to have to go through it again.”
Virginia’s Advice for Patients
“A few things I want to share with anyone who is going to have this surgery or who recently had the surgery. Not all patients are the same, and some may have a lower tolerance to pain. If your pain tolerance is low (like mine), here’s some advice: the incision area will hurt a lot at first and it may be sore in that area (especially to the touch) for some time. When I brought this up to Dr. Holt, he said this is normal since there is still a lot of inflammation and edema.”
“Also, I feel very strongly about women’s post-op experience and how it differs from a man’s post-op experience. Anatomically, gravity will move our external parts around and can cause more discomfort in the incision area. Don’t let the pain influence your decision to have the surgery. Just like a toothache, once it is fixed you forget how bad the pain was.”
Virginia’s Post-Op Experience
Virginia is the first patient to receive the On-X heart valve in Volusia County, Florida. It has been approximately three months (as of September 2016) since Virginia’s surgery, and she continues to heal and get stronger every day.
“The other day, I put a music CD into the Bose and started dancing. A little cautiously at first, then after a few minutes, I stepped it up a little, only just a little since I am still healing. I’m glad the surgery is behind me. Now, I can get back to completing my newest book and in a month or so I’ll go back to taking aerobic classes.”
As she continues to recover from her surgery, Virginia enjoys dancing, slowly getting back into her workout routine, and spending time with family. Virginia is also elated that she is taking only a minimal amount of Coumadin.
“I hope that sharing my experience will expand the options for other people who have to make a decision concerning their heart valve surgery.”
Reduce INR after 3 months of standard therapy.
NOTE: This story reflects one person’s experience. Talk to your doctor about your situation and possible treatment options.