After 24 years of dealing with stenosis, I felt maybe I should share. I was born with stenosis along with a murmur and in layman’s terms “a hole in my heart”. I was diagnosed at 3 months by my family doctor after my poor mother brought me in. I was a very unhappy baby; crying, screaming, difficult to settle, etc. Two balloon caths were performed sometime between 3 months and 5 years of age. This was done to keep me going until I was old enough to have my first valve replacement.

Growing up, I couldn’t keep up with the neighbourhood kids. They were faster, more agile, didn’t nap as often, etc. My symptoms got worse and worse from the time i was 4 (after my last balloon cath) to when I was 9 and could barely make it through a day of school. I couldn’t participate in after school activities because I needed to go home and sleep. Weight gain was always a problem due to my inactivity. My poor mother often kept me at home from school after a particularly busy day..like if we went to the circus or the movies after school. I was just plain exhausted all the time, would sleep for hours, and was frequently sweaty.

I had my aortic valve replaced with a homograft when I was 9 and what a scary time! I remember all of it, quite tramatic. The needles, bright lights, daily blood takings by “vampires”, teams of doctors crowding around your bed peering at you, unable to sleep and having to stay on your back at all times..even in sleep. Surgery was scary up till they gave me the anesthetic. Waking up was even worse as I was disoriented and my sight was fuzzy. My mouth felt like it was glued shut and all you feel is pain. Thank god for pain killers.

I was in the hospital for 7 days, 8 hours of that in surgery. Recovery felt like a month when in actuallity I was up and walking by day 6 after surgery. Amazing really. It took about 2 months for full recovery and by that point I was a new kid. Energy, not sweating, out playing instead of on the couch after school. I still was not and never will be an energetic person but at least I could function normally.

I’m now 24 and my health has declined very gradually since that surgery. When I was 20, I became symptomatic again with decreased energy and lots of sleeping. When i was 23, I started gaining weight from decreased movement and my energy was at an all out bottom. The sweating has increased to the point where I can be soaked from head to toe and simply be standing doing nothing. I now get out of breath climbing 2 flights of stairs, walking up hill, or rapidly walking. Forget running, forget climbing a steep hill, forget coming home from school or work and going out with friends. I’m having my next surgery in 3-4 weeks and I’ll be having another homograft valve put in. Wish me luck.