A Community Member Shares: Is TAVR in My Future?

Living with aortic stenosis can often come with uncertainty, especially when considering all of your treatment options.

A CardiovascularDisease.net community member recently shared the realities of living with aortic stenosis and anticipating treatment, including transcatheter aortic valve replacement (TAVR). Here is what they shared.

A timeline for valve replacement

"I was initially diagnosed with aortic sclerosis (via CT) to confirm a heart murmur about 7 years ago. I began having yearly follow-up transthoracic echocardiograms (TTEs) when the diagnosis changed to aortic stenosis 2 years later.

"I have been asymptomatic to this day, with the exception of occasional shortness of breath, which I personally attribute to my other diagnosis of sarcoidosis (which appears to be largely in remission at this time).

"My doctor has said that the calcification of my valve increased a fair amount over the past year, so I will likely need valve replacement in the next few years once I am symptomatic related to the aortic stenosis. I was told by my cardiologist that calcium buildup can worsen the stenosis and accelerate the timeframe for valve replacement."

Strengthening my bones, exercising my heart

"That being the case, I was told not to take any calcium supplements but to get calcium via a dietary route, such as eating broccoli, salmon, kale, sardines, etc. I already suffer from osteopenia, so it has been challenging to try to get enough calcium to prevent osteoporosis.

"Additionally, I now walk about a mile every morning to try to strengthen my bones as well as exercise my heart. I am also very conscientious about my salt intake to maintain my blood pressure in a normal range. I do not have blood pressure issues at this time but want to take preventative steps to avoid future issues."

Coping with the unknown

"I have anxiety as a result of this diagnosis, as I don’t like the 'unknown' concerning when a valve replacement might be necessary. I have described this as feeling like I have 'an axe over my head.' I am the type of person who likes to take measures to avoid negative situations (if possible) and therefore feel anxious about this diagnosis. It is also stressful having another condition, sarcoidosis, that can cause similar symptoms to aortic stenosis when it progresses.

"I cope with the unknown by learning as much as I can about aortic stenosis, its treatment options, and finding the best diagnostic/surgical team for the future. I believe 'knowledge is power,' which helps reduce some of the anxiety (to a degree), and I am also fortunate to have the support of my daughter, who is coming to appointments with me."

Exploring TAVR as a treatment option

"Since my cardiologist thinks I may be a TAVR candidate when valve replacement is needed, we’ve begun discussing some of my questions related to the procedure, because it helps me feel more prepared for what may happen in the future. I am interested in exploring TAVR as my treatment of choice, as it is less invasive than open heart valve replacement.

"Some of my questions concerning TAVR have been whether I am a likely candidate for it and [whether I am] considered low- or high-risk based on my medical history, etc."

Questions to ask your doctor about TAVR

You may find it helpful to ask the same questions as our community member:

• What are the side effects of the procedure? Are there steps I can take to reduce or avoid potential side effects?
• Will I need to take a blood thinner or any other medication as part of my daily regimen after surgery?
• How long can I expect a valve to last?
• What is the recovery period like? Will I have any post-surgical restrictions? If so, are they temporary or permanent?
• Based on my risk, what are the statistics available regarding valve type, life expectancy, etc.?

We hope that this community member's story helped shed light on the experience of living with aortic stenosis and looking toward the future for treatment options.

What would you want to ask your healthcare team about aortic stenosis, valve replacement, or a TAVR procedure? Share with us in the comments below.