My father died of heart failure 14 years ago. He had heart problems for years, but he was never very open about what he had. His mother had died of sudden cardiac death when he was only 4 years old. I knew that, but when my father was gone, my brother, sister and I found out at his funeral that many other family members also have heart problems: his sister turned out to have a donor heart and several cousins also had heart problems or died at young age… That was very shocking news.
Long story short, we needed to take a medical exam to find out if a genetic disease could cause heart problems in our family. And yes, unfortunately, my brother and I have been diagnosed with Hypertrophic Cardiomyopathy (HCM). Very scary first: if you are a gene carrier, what are the consequences (insurance, mortgage, life perspective)? Fortunately, the clinical Geneticist was able to tell us more about this inherited disease. We tried to discover all the ins and outs to get rid of this feeling of insecurity, but also because we have children we want to see growing up. Our children (now teenagers) have been treated by a (Paediatric) Cardiologist for a couple of years now… So far, everything looks good on the annual echo.
What the Cardiologist said was a key moment:
"Knowing is stressful... but so is not knowing too."
Soon they also will need to do a genetic test to be sure. We have talked about it with them and consulted with the Cardiologist. What she said was a key moment: “Knowing you have an inherited heart disease is stressful, but so is not knowing too…”.
Of course, if you don’t have it (50% chance), you don’t have to go to hospital for check-ups and you don’t have to think about it anymore.
Now that I know which genetic cardiac disorder I have, it also gives me some sense of control over this cardiomyopathy: I can surf the net and gather information, learn, ask my Cardiologist specific questions and get in touch with very supportive fellow-sufferers!