You never think it’s going to be you. Almost 2 years ago I was a pretty healthy 29 year old wife and mom of 2. Now at 30.5 I’m an open heart surgery survivor and living with an undiagnosed autoimmune disorder (tests have been done and specialist appointments made but with COVID-19 my appointments have been pushed).
So, In January 2018 I finally made the time to see my doctor about pretty persistent back pain and TMJ related pain. I’m going to push the fast forward button and skip over the many, many, many doctors appointments and tests plus severely progressing symptoms.
It was a beautiful April morning when I called my husband at work to tell him I was swollen and having shortness of breath, he came home and took me to our local ER. These next few hours then days almost seem like a blur now. The nurses said you should be so glad that you had that particular ER doc, he loves to do unnecessary scans- he’s known as the scan man. Well the scan man saved my life. He didn’t realize it but, after my rheumatologist got the imaging, that ER doctor had discovered a 4.6cm aneurysm in a seemingly healthy 29 year old.
The rheumatologist made no haste in setting me up an appointment with a cardio thoracic surgeon, the division chief actually, of the University of Kentucky. As my husband and I walked into his office that first time I never could have prepared myself for the information we were going to hear.
Congestive heart failure, regurgitating aortic valve, a diseased aortic root. I was dying (literally dying. Not the “I’m dying” joke I’ve said countless times) With one listen of my heart the surgeon looked me in the eyes and said I’d be needing open heart surgery, and that he’d need to crack my chest open to do it. More tests ordered: Nuclear stress test, echocardiogram, and heart cath. The tests confirmed the surgeons thoughts; I had a Bicuspid Aortic Valve, the aneurysm in my aortic root caused the valve to fail, regurgitating blood back into my heart.
At 5:00am on July 15th, 2019 I walked into UK hospital with my husband, nauseated from the nerves. I had to have the surgery, if not I was going to die, no question about it. I mustered every ounce of bravery I could and never shed a tear until I was almost asleep on the OR table.
I woke up groggy, intubated. A warm hand touched my cold, pale body, I looked like a corpse. Side effect from the machine that cooled my blood down as it was being pushed through, keeping me alive while my heart was stopped. Coughing is the next thing I remember while what felt like a 3 ft pole was removed from my throat.
I’ve birthed two children, it didn’t even compare to the pain of having your chest sawed open. Most of the first few day’s are blurred, I’ve pieced together a bit with the help of Josh (he’s my husband). I wish I could say and then I was healed but, that’s not part of my story. My heart wasn’t beating properly, they said I had 3rd degree heart block, which if left un-treated would be fatal. 11 days after my open heart surgery I was wheeled into the heart cath lab and was given a pacemaker to get my heart beating properly again. I’m 100% paced, meaning the pacemaker is running constantly to keep my heart beating.
As of today, I’m 9 months post-op. My life has changed so dramatically since all this began and knowing my life will never be normal again sure can get a girl down. I’m healing slower than normal, all my doctors believe I have a connective tissue disorder but I fall in the 20% that have gene mutations not yet discovered.
This waiting, waiting to know what more could be be wrong with me, waiting for treatments. It’s exhausting, it’s frustrating, it’s so many emotions rolled all into one. My body is broken, so many symptoms, it feels like I’m stacking them all up like blocks, eventually the blocks are going to be too high, unbalanced and wobbly then, without warning, it will fall.