I have been told my whole life that it's no big deal, I'm fine. My doctors and family would say that PE is mostly a cosmetic issue and because I am female, my breasts make it less noticeable and even adds 'sexy' cleavage. I never saw it like that. They acknowledged my cardiac issues such as mitral valve prolapse but I was told that I shouldn't experience much pain. But I did. I would have sharp shooting pain in my chest that would cause me to stop whatever I was doing to catch my breath and wait for it to pass. I loved to dance and wanted to run track in high school but my PE kept me from pursuing either. The pressure of my ribs pressing against my heart and lungs caused me to become winded and feel as if my heart would explode out of my chest if I exerted myself past a certain point. Our family doctor told me that I was risking my life if I tried to be the athlete or dancer I hoped to be.
After years of trying to understand what was wrong with me, seeing specialists and telling others about my pain with no answers or relief, I learned to accept it. Accept that I wouldn't run or dance and accept the pain. Sometimes crying alone, praying for it to pass. When I was around 18 a doctor told me there was a surgical procedure to correct PE but said it was only done in rare cases on adolescents because their ribs were still forming and would therefore have better success. He also said that it was extremely risky, painful, may not even work, and would leave me immobile for close to a year. Years later I now know that this was beyond an exaggeration but I have also learned that many doctors were not well educated on these procedures at that time.
In my teens and 20s including following my stroke at age 29, I was told by doctors that surgery would be too painful, was unnecessary or may not even work. Over the last couple decades more people with PE have been vocal about their issues and requested to have surgery which has helped improve procedures and understanding of the condition through research. This increased understanding led to me being referred to a cardio-thoracic surgeon who specializes in pectus excavatum for a consultation. I wasn't sure what to expect but was intrigued. I ended up meeting someone who would finally explain my condition to me and give me the opportunity to change the cards I had been dealt. Honestly I thought that he would say that I was too old or because I had already suffered a stroke I shouldn't have surgery. To my surprise he did not. He pointed out that 42 is still young and that I am in great shape. He also took the time to explain what he saw when he looked at my CT scan and medical history. I had heard the term Haller Index before but this doctor took the extra few minutes to explain the term and how it helps gauge the severity of the patient's deformity. I learned that a Haller Index of 2 or 2.5 is considered normal. Then he told me mine is.......drumroll please ;)............an 11! Maybe as much as a 12 at the deepest point in my chest! I finally had a medical professional, a highly educated individual that has spent years working in his field tell me that I have a severe deformity that has caused my pain all my life and that he would like to help fix it.
The first image is from a CT scan of a female without deformity. The second image is my CT scan showing severe pectus excavatum
I appreciated the validation but mostly the honest and respectful way in which he spoke to me. He made no promises and I vividly remember the phrase "I'm not going to lie, it's going to hurt, a lot." I told him that I needed time to absorb everything we discussed and talk to my husband before deciding whether to have the surgery. He understood and has continued to help by making himself available to answer the many questions that have come up while researching PE and corrective surgery these past months.
I have released my anger at not receiving proper care and guidance when I was growing up. I'm grateful for who I am today and my many blessings, topping that list my husband and children. Who knows where I'd be if I got the surgery back then. I have faith that this all fits into a plan and purpose beyond my understanding. My gratitude also stems from the awareness that there are millions of people in the world without food, clean water and, basic human rights let alone the amazing health care that I enjoy.
I know recovery will be difficult but I believe it is worth it. I'm thankful I was led to my surgeon and that research has developed a way to correct the defect.
I believe my experiences led me to pursue an education in health and wellness in hopes to empower others to take charge of their health through education and learning to listen to and understand their bodies. I believe the focus of healthcare must shift from treatment to prevention and patient centered care is vital. Health care providers need to inform and collaborate with those they serve as well as never stop learning and be open to complementary and alternative medicine. It is vital that they take a holistic approach by exploring nutrition and exercise before reaching for the prescription pad. Being mindful of what I eat and remaining active has helped me manage my symptoms and live a full life.
I plan on traveling the world with my soulmate and being around to enjoy my great grand babies. I want to share the gift of yoga that I continue to receive with others. I want explore the many places my career as a health and wellness educator will take me. I choose to believe that this surgery will help me to be the active, motivated, and energetic person I am but more so and for decades to come.
I am sharing this because I am grateful to those who shared their stories through clinical research, blogs, message boards, etc. They helped to inspire me and calm my fears. Also, as a reminder to myself to always walk in the light, knowing that I am fearfully and gloriously made. I wasn't made wrong, this surgery is part of my journey. I plan on embracing my truth so that I can live my best life while helping others to do so!