Introducing — BOHEMIAN AORTA
I am a 33 year old artist and preparing for my 3rd major heart surgery, all of which have occurred in the last 2.5 years.
I was born with a unicuspid aortic valve and 0.02% of people have this rare condition. I’ve always known I would eventually need surgery to correct it and this should of just been a routine fix.
No medical professional would of ever anticipated my health journey to snowball into the chronic illness that I navigate to this day.
Since learning about the need to seek surgical consultation in the fall of 2021 I have had:
54 office visits (surgeons, neurologists, PCPs, cardiologists, sleep specialists, etc), 8 emergency room visits, 22 tests of every flavor (CTAs, TTEs, TEEs, MRIs, EMGs, etc), countless amounts of needles in me,
40+ different prescriptions, 5 different therapists/psychologists,
500+ tacos (joking, though is probably is fairly accurate), and I’ve spent over 20 days as an in-patient at hospitals, mid pandemic, healing from different surgeries.
All to be given 1 ascending aortic graft, a mechanical valve, and 4 stents.
Much of my early thirties so far has been put on hold as this has taken up my entire focus. This process has drastically changed my life forever and my heart condition is still not fixed.
As a result of any of these procedures I have experienced physical obstacles including: a serious post-surgical sternal infection, atrial fibrillation, a paralyzed diaphragm (left hemidiaphragm), and brachial plexopathy (nerve damage through my left arm). Most recently, i’ve been diagnosed with subclavian steal syndrome due to a kinked stent that’s blocking my brachiocephalic artery, reducing blood flow to my right arm and my brain, which gives me numerous symptoms.
As you can imagine, the mental obstacles experienced through any of this has put me through some of the most challenging moments i’ve ever navigated.
In this third attempt (most likely by this fall),
I will be getting a complete redo procedure, in which they will perform a much more complex open heart surgery to remove the stents that were placed in the spring of 2023, correct a pseudo aneurysm that formed after my first surgery, and to replace even more of my ascending aorta/aortic arch with additional graft material.
My health situation has been far from perfect.
Even before all this started, my life path had been far from perfect.
Yet, I can say with confidence as I type this, that I am the happiest and most content I have ever been.
This page will give a very raw approach to personal growth, resilience, and how I’ve become the person I am today.
I look forwarding to sharing thoughts on identity, music, career, relationships, addictions, community, spirituality, insecurities, anxiety, depression, sexuality, purpose, creativity, mental health, resilience, and whatever the hell else comes to mind.
A bit more about me:
I play in several prominent-ish local bands. I’m an empath and goober. I’m a sustainability enthusiast with 10+ years in the environmental field and I work at a small composting company in the city.
I’m an amateur buddhist and mindfulness practitioner, nurturer of community, traveler, long distance runner, and seeker of spirituality.
I’m a listener and support system for anyone that may be in need.
I was born in Delaware, which is where I spent most of my life thus far, bounced around a bit, and have been a Philadelphia resident for over four years since January 2019.
I am a lover of music history, people and things on the fringe, the misunderstood, laughing, gardening, weird dark comedy, thunderstorms, anything flavored with ginger, nature, deep conversations, my cat Tahini, but above all, a deep love for my beautiful fiancé.
May this be a beacon to anyone in need.
❤
