- Posted February 16, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
Half a heart and 29 years
But, my parents decided against it. Instead, they opted to let myself, the doctors, and God decide my fate. I had 3 surgeries, collectively called the 'Fontan' operations, and I flourished. Out of the hospital in two weeks, and from age 4 to 28, I lead a (I thought) normal, happy, productive life.
I chose the field of emergency medicine and became a paramedic, and had no issues keeping up. I had no more health issues than my counterparts, and barely thought about my defect. In fact, aside from my scar, there was no indiction that I had ever been sick.
But then, in my late 28th year I started having problems. Arrhythmias, feeling tired, and just a general feeling of 'blah' washed over me on an almost daily basis. I slept almost constantly, and never felt refreshed. I admit, up until this time I did not get my yearly heart caths, so I really had no idea what was going on in there. But, I chalked it up to working a lot, and getting older.
Then, one night I had what felt like a stroke (headache, blurred vision, slurred speech, difficulty walking) but ignored it and went to bed. Thankfully, I woke up feeling exhausted and 'out of it' but had no lingering symptoms .I went to work and my partner immediately knew something was wrong. She caught me trying to do a simple task and repeatedly failing, growing more frustrated by the minute. She encouraged me to be seen in the E.R. and part of my follow up was a cardiology visit.
My cardiologist insisted on a cath, and I finally consented. That's when I discovered how bad my blood flow was. According to the doctor I had very sluggish bloodflow, and the majority of it 'just swirled around in the atria' without actually going anywhere. 'How are you not sick?' he asked. I didn't say anything, but in my head I knew that I of course, was sick.
He advised me to have the Fontan revision, and I agreed to do it. It was my absolute worst fear coming true. I dreaded doctors, was terrified of needles, and avoided anything even remotely resembling surgery at all costs, but I knew I couldn't hide it much longer. And I knew I was only going to get worse.
In the months leading up to my surgery I became increasingly stressed and scared, so much so that for a week after scheduling it I didn't eat or sleep. I was so afraid of going to sleep and never waking up. I spent the night of March 19th 2013 staring at fiancé, watching him sleep and praying I would get the chance to do it again someday.
By the time the sun came up on the 20th I was already in the pre-op area. And by midnight on March 21st I was out of surgery, extubated, and being (but not feeling) miserable. Five annoying, but not painful nor difficult days went by, and finally, I was discharged.
I felt better the day after surgery than I ever had before, and that was with 3 chest tubes, a ton of pain meds on board, and nothing in my stomach. After 5 days, at the time of my discharge, although still tired, I felt renewed.
Three weeks later I felt like 'me' again. All the water weight was gone, the bruises had healed, and the glue from my scar had been shed.
One month later, I was back to work light duty. Two months later I was cleared to go full duty. Today, I am a few weeks short of a year out, and life is still new to me.
Yesterday I went sledding with my fiancé and his son. It was the first time since I was 8. I never went between then and now because it wasn't fun for me. One trip and I was too tired to go for round two. But yesterday....
Yesterday I did it until the kid got bored. And we're going again tomorrow.