3 years post PEARS and I’m loving my life

Hello there you who might be waiting for your PEARS operation or thinking about whether to go for it. Here are some thoughts from a person who had a tough recovery path but who would still do it all over again if need be. 

I started seriously thinking about aortic surgery after a young Marfan friend suddenly passed away. My own cardiologist had assured me year after year that my aorta was nowhere near surgery numbers but I decided to go for a second opinion from a heart surgeon who does PEARS surgeries.

The meeting with the surgeon was really short because I had already done all my homework. I knew what the more or less international criteria for PEARS was and that I would be a candidate for it with my aortic measurements and family history. The surgeon quickly confirmed this, saying I would be having surgery within a few years anyway and that it would be a good idea to do it while I was in great health and relatively young at just under 40 years. So we decided to set up an operating date in about 6 weeks.

I’ll summarize my preoperative and operative phases in one sentence: Everything went really well, the surgery took about two hours and I was back home in 5 days. But after a great initial recovery, my immune system reacted to what had happened. This took the form of countless different but related issues like recurring pericarditis to atrial fibrillation and a sensitized pain system. I was in and out of the hospital a lot of times. 

The recovery was long. In this period, I talked to my surgeon and with Tal several times. Both of them kept assuring me that this just sometimes happens with heart surgery regardless of the operating technique and that it probably would subside at some point. I also talked to a cardiologist and a rheumatologist who confirmed this. They also reminded me that heart surgery is such a massive shock to the body that full recovery can in some cases take several years. Nonetheless, it felt like it took forever and I already accepted the idea I wouldn’t be able to work again.

This is also my message to you as a fellow patient: Sometimes the body reacts to any kind of surgery in unexpected ways. If this happens to you, I know it’s hard, but keep trusting that your body will eventually find a new balance in the new situation. In my case it took 3 years away from working life and lots of different doctors’ appointments, therapies and just getting to know my body all over again. If you don’t mind one word of advice: If you are in a burn out, consider recovering from that before undertaking any big surgery if you and your doctor think it can safely wait a bit longer.

As I’m writing this, it’s 3 years since I had my PEARS surgery. I’m finally back to working full time and enjoying family life, often forgetting I’ve ever even had a heart surgery. Life is not the same as it used to – I still have to balance things much more carefully than I used to in order to manage the issues I was left with – but it’s not worse either. And most importantly, I know I’m no longer at risk of an ascending aortic rupture – a crisis that took my dad away from us way too early. So, If I had to choose again, I would do it all over again. Best of luck to you with your big decision!

Year of operation: 2020