I am a 40-year-old female from Los Angeles, California and am extremely honoured (and relieved) to be able to share my story as patient #709.
Like many of the testimonials on here, I was motivated to get PEARS because of its superior technology which allows you to keep the entirety of your aorta, doesn’t require your heart to be stopped, and rarely necessitates the use of a heart-lung bypass machine. Combined, this makes for a faster recovery, lower mortality rate, and ultimately a better quality of life!
My family history with the traditional (barbaric) aortic surgeries
My mom obtained a mechanical heart valve in 1995 and has since had two more heart operations. She also has a slew of secondary health problems compounded by her blood thinners including osteoporosis. My brother had a valve-sparing root replacement procedure in 2009 and the surgery took so long he’s never quite been the same, likely due to peri-operative neurological complications. Despite only being 26 years old and in good health (beside his heart), my brother awoke to a breathing tube and restraints on his arms to keep him from pulling the tube out! Now, on top of this trauma, my brother still carries the anxiety of future open-heart surgery.
I, on the other hand, am writing this one week after my PEARS operation (November 3rd, 2022) and walked 6 miles today! Moreover, though there are no guarantees, my chances of needing future heart surgeries to my aortic root is unlikely; and surgery to any other part of my aorta, much reduced because the PEARS sleeve moves with your heart.
Pregnancy prior to PEARS
Most American patients with Marfan’s rarely (if ever) are told about PEARS. I learned about PEARS after posting about the successful delivery of my son on the US Marfan’s Facebook page, following a highly medicalized, high-risk pregnancy. Both my cardiologist at Kaiser-Sunset and Cedars Sinai stated that I should have had surgery before getting pregnant (oops); and should I decide not to abort, they encouraged me to seriously consider having the aforementioned invasive heart surgeries while pregnant (no thanks). By no means should everyone do what I did. I personally handled my pregnancy as I did because, in my opinion, I had multiple protective factors. For example, I was asymptomatic, had access to bi-weekly echoes, and my aorta never grew past 4.6 cm. Thus, I felt the risk of traditional heart surgery during pregnancy outweighed its benefits. Had I known about PEARS, I would have opted for heart surgery a long time ago. Instead, I tolerated the anxiety of my aorta enlarging for much too long. [Side note: Dr. Austin shared he has successfully performed PEARS on pregnant women and infants! Some women are freezing their genetically cleared eggs and getting PEARS in preparation for future pregnancy.]
Getting PEARS with American insurance
For more information on this subject go to the US Facebook page where I discuss the benefits of getting a health advocate and more (key term #exovascpears).
Getting PEARS while coordinating from the US
Upon setting my mind to get PEARS, I went through the list of surgical centers and emailed all the centers in Europe, and I think Australia. I asked for an estimate and more information on their admission process, specifically for American patients. Though London Bridge Hospital (LBH) was more expensive, in the end they were the most responsive, organized, and if you do your research, you’ll learn they have the most experienced PEARS surgeon out there! Thus, I was more than happy to pay a little more (around 5k-10k depending on who you compare them to). I knew choosing LBH would mean everything would get done properly the first time. Having Alan Rayner, the PEARS Program Lead, as a personal point of contact was extremely valuable. I doubt any of the other surgical centers have anyone quite like him. He was extremely attentive, responsive, and supportive. He assisted me in gathering any letters, studies, or phone numbers I needed as I worked to contest my insurance and coordinate with my doctors in California. Obviously, not everyone has to go to LBH, but I’m sure glad I did 🙂
One Week Post-Op
As I write this, it has now been 7 days since my surgery, and I can honestly report I am doing better than I ever imagined! The physical therapist at LBH advised that I keep all physical activity “light” for at least 6 weeks. “Light” is arbitrary in my mind so, she advised I monitor my “subjective level of exertion” by making sure I can “walk and talk” at the same time. One week in and I “walked and talked” for a total of 6 miles today! I know for a fact this would not have been possible had I settled for the traditional (arguably barbaric) surgeries offered in the US.
TikTok
My younger brother encouraged me to document my experience on TikTok (eye roll). Though it’s a bit embarrassing and not something I necessarily enjoy doing, I truly believe more people need to know about PEARS. Therefore, despite seriously not trusting this app, I downloaded it and have uploaded a few videos of my experience leading up to the operation and after. If this interests you at all, you can find me under username: christinesgood.
Thank you, Tal Golesworthy, for all you have done i.e., creating PEARS, herding medical staff, and continuously overcoming misoneism, egotism, and all kinds of red tape. But most of all, thank you for having had the courage to be patient zero! My family and I are forever in your debt.
Tips for a comfier recovery
- Cough Drops (Keep them in your toiletry bag at the hospital)
- Large heating pad and massage gun (to help relieve the tightness in your neck, chest, and shoulders). My husband bought mine $50 on Amazon, and it works great.
- Extra-long cell phone charging cable (so you don’t have to constantly get up while relaxing in bed)
- Lots of healthy fluids (i.e., water, bone broth, coconut water, and trace minerals to facilitate healing and bone building)
- Guard Your Mindset: They say you are what you eat, that also applies to your mind/brain! Be mindful of what you eat and focus on; gratitude, humor, and minimal sugar have helped me.
