As we continue the Mental Health Series, Catherine Paour, shares her story with CCHD. Misdiagnosis and a CHD discovered later in life has forced her to face anxiety and urged her to spread awareness.
Lots of prayer, purpose and passion has prepared me for a whole (hole) new way of life! I kept asking myself, “What is holding me back from living a life I would love?” I was always struggling and complaining that my lack of energy and stamina was really in the way of me pursuing my dreams after working full-time for the last 35 years and being a single mom to a child.
I’ve been a heart patient since the age of 12, when I was first told I had a heart murmur. I can visualize that appointment perfectly. At 23, I failed my new hire physical at a local Medical Center, and required a Cardiologist to clear me for employment. In 1997, as a newlywed, I had a Trans Ischemic Attack (TIA), or a mini stroke, and thought I was going to leave my new husband a widower. I had a baby in 1999, and I was surprised I survived. In 2002, after a few years of unbelievable stress, when my baby suffered Shaken Baby Syndrome in the care of a licensed day care provider, I begged my Cardiologist of the last 20 years to “dig deeper.” I explained that I simply couldn’t breathe, couldn’t carry my baby, or get groceries from my car to the kitchen. I got resistance everywhere I turned, from being called a hyperventilator, to a hypochondriac, to just plan ole lazy, until finally I was diagnosed with Heart Failure at Urgent Care of all places. Yippee. At age 42? WHAT? How come my cardiologist hadn’t told me this?
As time went on I was getting worse, shortness of breath, debilitating edema, my legs felt like concrete pillars, my digestion was horrible, my heart was pounding outside my chest, passing out, visual disturbances, wheezing like crazy and missing out of so much of life – it was never-ending. I ended up having not 1, not 2, but 3 Cardiac Ablations, with an additional 3 Cardioversions thrown in here and there. The ER knew me all to well. I was also on a home oxygen tank for a bit, and felt like a fool walking around work with a tank on wheels – that was not fun. My lung function was always about at 52% with no known cause. My heart failure had no known cause. I thanked God everyday for my Handicapped Parking Placard, and my parents still ran circles around me. I finally bought a used electric scooter to take my son to places like amusement parks and zoo’s, and I excluded myself from anything physical for the last 15 years. This also meant loosing friends and countless opportunities.
And then I found my SPARK!!! I started working with a Certified Life Coach, and I came away with better than I could have ever expected. I made a commitment to my self-care, to “be bold,” and to seek out a new cardiologist after over 30 years.
Within a week, my new cardiologist sat with me in a hospital recovery room, after a TEE, and asked me if I knew or had ever been told I had a giant hole in my heart. He described it as an Atrial Septal Defect – something I have lived with my entire life, undiagnosed!!!!! My mom and I were shocked, and I accidentally loudly answered “ uh… NO?”
I very quickly was scheduled for Open Heart Surgery at a top notch hospital to repair the hole. The surgeon said the hole was the biggest they had ever seen, and he specialized in this. He said I had a huge atrial aneurysm and the septal wall was basically non-existant. I didn’t have two chambers, just one big “swamp”. The hole measured 6 cm x 3 cm.
I was hoping to have a new found life, and love for it, but I find myself really struggling emotionally with the after effects and the bureaucracy of what I have been through in this experience. Three weeks after a succesful surgery, I went down hill fast and ended up in the ICU for a week with massive heart failure. My EF was at 10%. I had extremely low blood pressure, extremley high heart rate, every tachycardia there is, AfiB, blood clots, plueral effusion. It was terrifying, but I managed through it, finding hope in my future, the Lords breath breathed into my lungs, and my sense of humor.
From there on out, I wasn’t able to return to work. I finally made it to Cardiac Rehab four months later, but broke my tailbone sitting on an exercise machine. So I’ve been compensating for months and months, and my body is in pain from head to toe. Yet I continue to find the joy in hopefully having a healthier future, and I can’t tell you how hard it is to have every Dr. I see still to this day say, “You’re lucky to be alive”.
I’m back into working with a life coach, writing two non-fiction books, doing some public speaking and podcast interviews. However, I still deal with the severe anxiety about my “ex” cardiologist and how my CHD could it have been missed all this time, my fear of what would have happened if I didn’t make the bold move to go to a new Cardiologist, and WHY is my “ex” cardiologist deemed as meeting the gold standard of care in my case.
I also struggle with anxiety regarding my workplace leave of absence, disability plans and managing a less stressful life moving forward. The systems and lack of education in CHD is so prevalent in my community, and I don’t know how anyone thinks they can can endure so much trauma and bounce right back into a very stressful workplace. I’m scared. My short term disability is over, my long term disability has been denied and currently being appealed, Social Security Disability has not made a determination and my place of employment can no longer hold my position, and I am facing termination. Another surgery is on the horion as well, as soon as authorization is received.
But there is hope, I have faith. EARLY DETECTION is key. It is also important for adult patients to find medical professionals who know how to appropriately diagnose CHD and handle adult congenital patients, without making them feel like they’re just neurotic!