Jessica's Journal

I need some advice, and I would love the community here to offer me some wisdom! I am a woman in my mid-twenties, and my mechanical pulmonary valve is now almost 8 years old. Last month, I met with my cardiologist for my twice-per-year check-up. After reviewing my EKG and ultrasound from that day, he told me that my valve is deteriorating slowly as expected, but I have now officially entered the wide window of time where I could reasonably have surgery for a valve replacement. He said he hopes that my heart can wait another year before I get the surgery (because doing so would help reduce the number of surgical interventions I will need in the next sixty years), but he said it can be nearly impossible for any medical tests to determine when or if my heart will deteriorate rapidly over the next year. He said that my personal symptoms and experience need to be the main determining factor of when I choose to get surgery. So now I am faced with the scary choice of choosing when to get the new valve. My symptoms do not impede my life for now, and I am exercising as my doctor encouraged me to so that I can be more in-tune with my heart. But now it is my responsibility to choose when I should have my valve replacement. What would you do in my place; would you wait until you noticed your heart deteriorating rapidly to increase your long-term benefits, would you choose to have the surgery earlier than you feel you need it just to avoid any danger to yourself, or would you do something else entirely?

(The photo is a picture of me on my 25th birthday last month. A quarter century with a CHD!)

Yesterday, my friends and I attended the Adult Congenital Heart Association's awareness walk in Austin. The organization held it at a beautiful park near the children's hospital, and the weather was both cool and sunny for the few hundred people who showed up to walk. My friends' faces are covered here for privacy, but I promise they really are smiling! 😄 All three of us in this photo each have a variation of heart disease, although I am the only one who has had a valve replacement. It feels great to support each other like this and to meet others who truly understand what it's like to live with a heart condition.

I got a call from my cardiologist yesterday evening. He said that, based on the results of a cardiac stress test I did a few weeks ago, he wants to try and get another year or two out of my current artificial valve before undergoing a replacement surgery. This news brought me a sigh of relief, knowing the procedure is further off than anticipated. At the same time, I feel a bit of dread. I am blessed with relatively good health, but how I wish my heart valve trouble could be a one-time fix rather than a lifelong companion! It is hard to always prognosticate the next surgery and the next. I know there are many who feel the same and that knowledge does bring me comfort.

In the days and weeks post-op in 2017, part of my recovery was teaching myself (with the help of Bob Ross) to paint. I find that painting is emotionally healing for me; I tend to practice more of it during difficult periods of my life. Here is one of my favorite paintings I did in the month after my surgery about 7 years ago.