Jessica Withers – The Emotional Impact of Mitral Valve Stenosis, Part 1
At the age of 45, Jessica Withers was surprised to discover she had mitral stenosis. Valvuloplasty opened up the valve and her life has not been the same since. She works at Cornell University Library and spends most of her free time writing and enjoying being alive.
After my first blog entry for the American Heart Association support network, I was contacted by Tina Schuur. She, too, had mitral valve stenosis and was excited to find a “valve buddy.” Because our condition is now rare, we both have struggled to find resources. We excitedly dove into a conversation, comparing and contrasting our experiences.
My symptoms had been acute for seven years before I discovered I had mitral stenosis. In hindsight, I can see that I had symptoms on and off for much longer; but I didn’t start tracking my symptoms until my doctor put me on bedrest for exhaustion. From that time on, my energy level steadily decreased and other symptoms such as dizziness, shortness of breath, lung congestion while lying down, swollen legs, and chest discomfort emerged. By the time I landed in the emergency room with pneumonia in 2018, my mitral valve was so stiff that it had to be repaired before I could be discharged.
A 41-year-old human resources manager, Tina has noticed palpitations for as long as she can remember. She had an echocardiogram at age 19, but it was misdiagnosed as normal. It was over a decade later before that echo was read correctly after she experienced tachycardia. While she hasn’t yet felt many of the symptoms that I dealt with or had surgery, she now lives with anxiety in addition to the palpitations. This year is the tenth anniversary of her diagnosis which means the cardiologist is likely to find that the condition of her valve has deteriorated.
I am on the other side of a valvuloplasty and my physical health is amazing. But I have times when I grieve for those years of living with ill health; life was good and I was happy but life could have been so much easier if I felt well and my heart condition had not been severe. Tina hasn’t yet had to have surgery, but she knows it is coming and that causes her a lot of stress. If she did not have this diagnosis, she would be living her life differently. We are both frightened of what we know is to come: repeated repairs and/or valve replacement.
Talking through these feelings and experiences with Tina was reassuring and comforting. I have felt lonely in my diagnosis. Friends with cardiopulmonary diseases have similar experiences, but they are not the same and their treatment plans are quite different than mine. If you don’t have a friend with the same diagnosis as you, perhaps you can find someone here in the support network. Even though Tina and I are in different stages of mitral valve stenosis, we can empathize with each other. It is priceless to have a valve buddy.