Heart Disease - Jara WeinKauf

When I was born my skin was very blue, so after careful examination doctors found out that I was born with tricuspid atresia. My parents were shocked when they found out that their baby had a heart condition, more precisely only the left side was working properly and my oxygen rich and poor blood was getting mixed, due to the absent tricuspid valve.


There was no history of heart conditions in my family and my parents enjoyed a very healthy lifestyle, which is why this came as such a surprise to them. After a palliative operation I was doing fairly ok, but had to go back to the hospital frequently as every little cold exposed a high risk for me. I am very lucky to have been born in 1986, when medicine was already much more developed than say just a few years before, and to have grown up in a country with a proper health care system (Germany). When I had my first open heart surgery in 1990 the operating surgeon just came back from the U.S. were he was taught the Fontan procedure, which had been a very new method back then.

As a child I was always aware of my heart defect, but all I wanted was to be normal. So I never let my condition stop me from trying to keep up with the other kids. I attended primary and high school like everyone else, with the only exception that I was exempt from PE class. In hind side not having to attend PE is kind of cool, but back then it was something that bothered me quite a bit as I was the odd one out.
My heart condition never played an obvious role when it came to choosing a school, university or career. As I was born with tricuspid atresia I knew that sport is not my strong suit, even though this did not stop me from being active nonetheless, go horseback riding and travel the world.
It is important to me to show that my heart condition did shape me, but does not define me. Due to my medical situation I learned to value my time and health very highly. I am constantly trying to make the most of the time by exploring the city, traveling, spending time with friends or doing sports. I do not take my health for granted and try to abstain alcohol and naughty food as much as possible.
Sport is a big part of my life, which takes a lot of energy, but also provides me with energy in return and fills me with joy.
I’m hoping that everyone who is newly diagnosed with an invisible illness doesn’t stop thriving and dreaming. Don’t underestimate what your body is capable of, as long as you put your mind to it.
[Check out more from Jara at @OptimisticHeartBlog]