Aortic Stenosis: A Caregiver’s Guide From a Patient’s Perspective
Receiving a diagnosis of aortic stenosis often comes as a shock to both patients and their loved ones. And learning that treatment involves a procedure to replace the diseased valve can be a frightening prospect. As a care partner, you might be wondering what you can do to support your loved one through this process. As someone who was diagnosed with aortic stenosis and underwent transcatheter aortic valve replacement (TAVR) to treat it, I want you to know this: Never doubt the positive impact you can have in your role as a care partner and source of support. Most patients I know say they could not imagine going through this process without the support of friends and loved ones. I know I feel that way!
When I had TAVR in 2014, my partner Darryl was my hero. The things he did that may have seemed simple (like driving me to appointments, taking notes, and keeping a list of questions to ask my team) meant the world to me. When I felt stuck in my own anxious thoughts about what might go wrong, he helped me picture all the ways life would be better once I had my new heart valve. And during my recovery, he helped me stop and notice all the positive changes. If your loved one has been diagnosed with aortic stenosis and needs a new heart valve, here are three ways you can support them:
The symptoms of severe aortic stenosis (shortness of breath, fatigue, heart palpitations, loss of stamina) can make it difficult for your loved one to manage their normal daily activities. And sometimes, symptoms can worsen noticeably while a person is waiting for their valve to be replaced. Your loved one may need some help, but there’s plenty you can do to make a difference:
- Prepare or order fully cooked meals to go into the freezer, that can be reheated. Easy meals can be helpful prior to treatment when your loved one is experiencing increased fatigue, especially after a full day at the hospital for appointments and tests, or after the heart catheterization/angiogram that is done prior to TAVR. The patient will need to rest and take it easy after this outpatient procedure, so an easy meal for that evening would be a big help.
- Tackle some to-do’s that may require significant energy or stamina, like yard work, cleaning, shopping, or errands.
- Volunteer to drive them to appointments and tests.
- Offer to take notes at appointments; if you can’t physically go into the appointment, offer to take notes via speakerphone.
- Keep a list of questions for medical providers.
- Help them pack for the hospital before their valve replacement procedure.
If your loved one is struggling with fear and anxiety about their valve replacement procedure, help them paint a vivid mental picture of positive outcomes. Remind them how wonderful it will be when they are able to breathe easily and able to enjoy specific favorite activities again. You might say something like, “Just picture how much better you’ll feel when you have a healthy blood flow again and all the cells in your body are getting the oxygen-rich blood needed to function well.” Darryl would do this for me often whenever I would express fear about what might go wrong. His reminders of all that could (and did) go right helped me focus on the many positive reasons for having TAVR.
Allow your loved one to feel and express their emotions. It’s not helpful to tell them not to feel afraid or that they shouldn’t feel a certain way. Acknowledge and validate their feelings. It’s normal to feel anxious. Remember that positive outcomes after valve replacement are the norm, and the risks you and your loved one may fear are rare and not likely to happen. Keep these tips in mind:
- Celebrate the little things (and big things).
- Surprise your loved one with a small gift: a favorite snack, flowers, a magazine, or something else.
- Learn from others’ experiences how to manage anxiety about upcoming valve replacement and share what you’ve learned with your loved one.
- Encourage your loved one to reach out for support from other patients who have already gone through the treatment process. Hearing about the actual experience from someone who has had the same diagnosis and treatment is invaluable! A few great options are through Mended Hearts, Heart Valve Voice U.S., and support groups on Facebook.
We all know that in order to effectively help someone else, our own basic needs must be met. As the saying goes, you can’t pour from an empty cup. Keep your cup full so you have something left to give your loved one. It’s not selfish to take care of yourself; it’s imperative. If you’re not sure where to start, check in with yourself about the following:
- Make sure you are eating healthy foods and getting enough sleep.
- Let some things go; you are adding to your responsibilities, so you will likely need to let something else slip for the time being–as long as it’s not your own basic needs like sleep and healthy food.
- Talk to someone about your own fears, worries, and stress. You need emotional support, too. Just make sure you’re getting support from someone other than the person with aortic stenosis or those closest to
Supporting your loved one through this process is a gift. Most patients find their quality of life improves dramatically after valve replacement, because it eliminates symptoms caused directly by aortic stenosis. After my TAVR, I realized just how bad my symptoms had been. Now, I can live my life without shortness of breath, fatigue, or the other issues caused by aortic stenosis.
Many patients feel like they have a new lease on life! I certainly did. And it’s important to me to stay as well as possible. As a caregiver, your support can go a long way in helping your loved one make healthy lifestyle choices once their valve has been replaced. By making healthy changes yourself–especially if you live together–you can provide the foundation for your loved one to thrive.