Why did I have to go through open heart surgery TWICE? Why did I have to lose my favorite hobby (long distance running)? Why? I am so angry, sad, and I still just don’t believe this…
The mantra above goes through my head all the time. Two years ago I was a happy and healthy gym rat. Spin classes, marathons, sprints, swimming laps for hours—you name it, I was doing it. Then I had crushing chest pain (at the gym, of course) and was eventually diagnosed with anomalous right coronary artery (ARCA). In autumn of 2016 I elected to have open heart surgery to correct it. I wanted to be able to run around and be the best mom I could be for my kids. I wanted to be the best partner I could be for my CrossFit-loving husband. For myself, I wanted to get back to the gym—I did not want to be in pain with physical exertion.
But then I had post-pericardiotomy syndrome, which feels like a heart attack. It is inflammation of the pericardium, the sac around the heart, which occurs rarely after open heart surgery, and remains poorly understood. Most people who have post-pericardiotomy syndrome take NSAIDS for a while and then it goes away.
Not me! No, my post-pericardiotomy syndrome turned into an autoimmune reaction with severe, chronic pericarditis. My immune system was attacking my pericardium because it was breached during the ARCA repair. It hurt very badly. My doctors tried many different drugs. I fractured my spine twice and gained, lost and regained 40 pounds from the side effects of prednisone. I saw multiple doctors across four different specialties of medicine. After more than year of this, my doctors and I agreed that I needed a radical pericardiectomy, which is another open heart surgery.
In the winter of 2018, my surgeon removed my pericardium almost completely (he had to leave a tiny bit around a very important nerve). I do not have a pericardium anymore. My future should be OK, but my case is so unique no one really knows. No one really knows how much exercise I can do. There is concern about high impact activity because I don’t have a pericardium holding my heart. There is concern about my heart rate going too high. No one really knows.
I’m a type A, organized, planner-type of person. It’s bewildering for me to deal with the vague nature of my situation. I am very thankful for my doctors. I am thankful I am alive. I am thankful that I am not in pain right now. I am thankful, but will never really believe, that I am supposedly never having open heart surgery again.
But why? This came out of nowhere! And what now? And what to do with all these feelings? I used to process my feelings on the treadmill, running mile after mile. Whether it was the endorphins or the actual time I spent thinking through the things, I always felt better. What am I supposed to do now?
One thing I do is sew. I’ve been sewing on and off for over 25 years but now I sew like crazy. I listen to loud music and instead of running, I channel my feelings through sewing and working with textiles. My friend Steph is an artist and a teacher and she showed me how to make print blocks.
Now I embellish fabric with my own print designs. I make bags, quilts, clothing and thread drawings. Thread drawings are “drawings” I create with my sewing machine. I use layers of fabrics and threads. I do not plan out the projects the way I used to before my open heart surgeries. Instead they evolve as I work. It feels like channeling emotions instead of executing a planned project.
I am experiencing some sort of metamorphosis. I cannot do everything I used to do. I am a warrior, though, and I will try my best to become the best person I can be for my sake and my family’s too. I hope in the long run (pun intended!) my CHD brings positive changes instead of just pain.
The thread drawing shown is an aspirational self-portrait. It shows a woman with CHD but it has become something beautiful about her instead of a nightmare.
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