We've interviewed dozens of patients who have heart valve disease. They have valuable advice for others facing a similar diagnosis. Here are some of their insights from diagnosis through surgery and life afterwards:   

Keep up with primary care 

I think it's important for people to have regular physicals with their primary care providers, including a stethoscope exam. Usually, this exam is going to be normal. But if it isn’t, you want to catch it before valve disease gets bad.   

Cole Moro, surgical valve replacement (mechanical valve) at 27  

Be persistent

If you think there might be something wrong, then keep asking for answers; don’t give up. I wish I had known sooner that I needed valve surgery. It would have given me so much more quality time.   

Dianne Galbraith, surgical valve replacement (mechanical valve)  

Make a post-surgery plan, especially if you live alone

Have a plan for after surgery. You need people who love you, and whom you can trust, to be with you in the beginning. Make sure you know what to do, where to go and who to call if something unexpected happens, such as Afib or an infection.  

Pam Husband, surgical valve replacement (tissue valve)  

Take advantage of cardiac rehabilitation

You don’t know at the beginning how heart surgery is going to affect you. So, I encourage people to participate in cardiac rehabilitation if they have the opportunity. Most people are quite anxious when they first come; the program can provide education that is reassuring.   

Dean Snow, psychologist and patient, surgical valve replacement (mechanical valve)  

Track your health with benchmarks

After valve treatment, you need to be proactive in monitoring your health. I’m a big believer in benchmarking — making a note of health indicators such as normal blood pressure and oxygen levels (using a finger clip oxygen monitor). This can really help you notice when something is off, and take action before it becomes acute.   

Mark Parry, caregiver for his father, who had surgical valve replacement and TAVI