Welcome to My ACHA Campaign & Personal Story Page
Hi there, thank you for visiting my Walk for 1 in 100 personal fundraising page. Please consider making a tax deductible contribution to support my fundraising efforts on behalf of The Adult Congenital Heart Association. All funds raised benefit CHD research & programs. I appreciate your support.
My name is Mandy. I'm a recently initiated Congenital Heart Defect (CHD) warrior. My CHD was only discovered last June when the palpitations I thought were from stress &/or clariitn-D prompted a referral from my primary care provider (PCP) to a cardiologist & then to an Adult Congenital Heart Specialist after an EKG, echocardiogram (echo) & cardiac MRI.
My CHD most closely fits into the Ebstein's Anomaly (EA) diagnosis, a rare CHD of the tricuspid valve. In EA, the tricuspid valve sits lower than expected (displaced) in the right ventricle, & the tricuspid valve's leaflets are malformed. In my case, the displacement & malformation was minor, which may explain why it wasn't caught & I didn't have symptoms until later in life. However minor, they still caused leakage back through the valve (regurgitation), making my heart work less efficiently. After years of prolonged regurgitation, symptoms are often atrial fibrillation, which is what my palpitations ended up being, as well as right atrial enlargement. So the palpitations were a warning sign that I'm grateful I didn't ignore.
The fact that my condition wasn't caught for 34 years is highly uncommon, but is a testament to how resillient, adaptable & amazing our bodies really are! Through the research my husband & I did together, we learned that each CHD has its own quirks & that each patient is unique, so listening to my body as well as tirelessly advocating for myself was/is crucial. Through Tony's (my husband) suggestion in the darkest times of my adjustment period, I sought out others w/CHDs & particularly EA through peer support facebook groups. This is where I finally felt a sustainable solace. I found a wealth of resources, reassurance wisdom & most of all, hope from fellow warriors that I would rise up stronger than I ever thought myself capable.
My ACH team at the UW has been very supportive in this journey. They've answered (& continue to answer) all of my questions & never make me feel rushed. We effectively collaborated on getting my case reviewed by one of the top tricuspid valve repair surgeons: Dr. Joseph Dearani with Mayo Clinic in MN. Long(er) story short, I'm now 9 weeks post-op this Valentine's Day from Dr. Dearani's outstanding repair through open-heart surgery 12/13/18. I'm feeling better & stronger every day. I continue receiving excellent care w/my amazing home team here in Seattle at UW Heart Institute. I'm proud to walk w/my heart team (both literally & metaphorically; after all, healthcare is a coordinated effort!) & w/other heart warriors this June in honor of resillience, compassion & awareness.
Help me raise funds to promote important research, resources for the CHD community, development of high standards of care for ACHD populations & administering an accreditation program for ACHD clinics. Please join me on this walk and/or donate a few $$ through my campaign to the ACHA if you're able. Thank you very much listening to my story. <3
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