My skin was very blue when I was born and after careful examination doctors found out that I had Tricuspid Atresia. My parents were shocked when they found out that their baby had a heart condition. Due to the absent Tricuspid Valve, only the left side of my heart was working; this means that my oxygen rich blood was mixing with my oxygen poor blood.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 okay, but had to go back to the hospital frequently as every little cold became high risk for me. I am very lucky to have been born in 1986, when medicine was much more developed compared to 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. where he was taught the Fontan procedure, which was a very new method at the time. With all the hospital visits, of course it wasn’t easy growing up, but I still wouldn’t change a thing. Having to deal with a chronic condition from the start doesn’t allow you to know any different, which is probably a good thing, as you can’t compare. All I know, is that I never let my heart defect stand in my way. I was, and still am, quite stubborn when it comes to accepting help and I’d rather try something several times before even considering asking for help. In my opinion, my condition made me more strong-willed and independent. It is important to me that I show my heart condition did shape me, but does not define me. Due to my medical situation I have learned to value my time and health very highly. I am constantly trying to make the most of the time by exploring the city, travelling, spending time with friends or doing sports. I do not take my health for granted and try to abstain alcohol and unhealthy foods as much as possible. Sometimes it is difficult to see other people my age not taking care of their body, when I envy them so much for their perfect health. Sports are a big part of my life; they take a lot of energy, but also provide me with strength and joy in return. There are numerous sports I am able to do, even with a CHD (e.g. horse riding, hiking, pilates, yoga, aerobics etc.), it just depends on how much you want to push yourself. 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.
If you want to read more of Jara's thoughts and life you can click the link here to check out her blog!