Tiffany: COA, 35
“It’s amazing you didn’t collapse on the soccer field”
My name is Tiffany Wasiuk and those were the words spoken to me by a pediatric cardiologist in the winter of 1999 at seventeen years old. I had just been diagnosed with 3 heart defects: long-segment coarctation of the aorta, bicuspid aortic valve, and aberrant right subclavian artery. This happened after recent inspection of a broken toe which revealed a loud murmur, hypertension, and absent leg pulses that sent me to the local children’s hospital. In that moment, my life changed forever.
I was born February 9, 1982, along with my twin brother. Murmurs were immediately detected on my well-baby exam, however doctors assured my parents it was innocent. Throughout my childhood I complained of chest pain and cold, painful legs that accompanied my ever-present murmur. Two different pediatric cardiologists did echocardiograms when I was 5 and 8 years old, again telling my parents I was fine. The day I broke my toe I was playing in an indoor soccer tournament with my longtime teammates and accidentally had kicked the back of another girls’ heel.
Weeks went by with it refusing to heal, which we later learned was due to my heart defects. When I finally went to the doctor to get an x-ray, my blood pressure was over 170/110 and no pulses could be felt in my groin or legs. I was immediately sent to Children’s Hospital of the King’s Daughters in Norfolk, VA whereupon I was diagnosed immediately and told I would need surgery right away. A month later, I had a patch aortoplasty operation through a left thoracotomy incision and my aorta was replaced with a Goretex patch. It was the most painful experience I’ve ever had. I also suffered collapsed lungs and a fever. My lungs re-inflated and the pain subsided very slowly and I was able to go home after 7 days and try to pick up my teenage life where I left off.
After high school, I moved to Richmond, VA to complete college and start a career in healthcare.
I married a wonderful man in 2009 and we enjoy boating together on the Chesapeake Bay
and traveling. We do not want children (for many reasons!), although my heart condition isn’t one of them. Unfortunately, in 2017 at the age of 35, proved to be the year where my luck ended. After 18 years of no issues and tons of energy, I began feeling unusual fatigue and breathlessness when exerting myself. I also noticed palpitations getting more frequent and I started retaining fluid. My local pediatric cardiology team didn’t take my concerns as seriously as I did so I sought a second opinion at a higher-volume adult congenital heart defect clinic at University of Virginia where I had a catheterization and was diagnosed with diastolic heart failure and residual re-coarctation. I strongly encourage second or third opinions. I love how they listened to me, treated me, and feel validated.
Life is a little different now. I am highly educated and work fulltime in healthcare from home and plan to always work fulltime if my health allows. But now I have good days and bad days health-wise and have to prioritize my professional and personal pursuits in order to conserve my energy. I’m grateful every day I get to work from home and not have to go into an office! I have to listen to my body and not push myself as hard. Going from being ‘healthy’ to a ‘chronic illness’ state is definitely strange and has been quite an adjustment. I know I don’t ‘look sick’ by my family and friends are absolutely amazing and have been so supportive and great cheerleaders. I’m on medications now that I take several times throughout the day including spironolactone, Enalapril HCTZ, hydrochlorothiazide, and Lasix. For additional energy, I’ve started taking Vitamin B complex supplements, which I think is helping. I have a home gym ad still try to exercise daily even when sometimes all I want to do is sleep. I make sure I take time to relax and do enjoyable things such as a bubble bath, read a book, light some candles, or go for a long, slow walk in nature. I don’t sign myself up to run every event now and keep my ‘personal and professional commitment’ plate relatively empty.
I will continue to need annual checkups and MRIs every 4 years, as well as lifelong medications. My aortic valve is still but still holding steady and my aorta is re-narrowing, both of which could lead to more surgeries in the future. I could be upset this happened to me but honestly, it gives me a perspective most don’t possess…the unbelievable happiness to be alive and make everything count. I’m almost grateful this happened when I was 17 because it allowed a shift in my attitude and priorities from that day on that make me who I am today…bubbly, happy, giving, and grateful.
My advice to other CHD patients diagnosed as a teenager would be you are not alone. Try to find other teens in your clinic or online to connect with. You’re stronger than you think and we are defined by how we react to situations. You can create your definition and use it for the positive going forward.
-Tiffany Wasiuk