Diagnosis

Warning! This page contains a whole lotta medical jargon!

When I first attended Synja-meetings (Synja is a branch for young and adults with congenital heart defect, in the Finnish Association of Heart Children and Adults) I was abashed the way people told about their heart defects when introducing themselves. But by openly sharing our stories and defects it was easier to make new friends and realise that other people had gone through the same I had, that I was not alone. And anyways, the standard sense of privacy had long gone after lenghty periods in hospitals.

Well, following the same pattern, I´d like to tell you about my heart. Apologies for the lenght, I tried to be sensible with the medical facts while describing the backgrounds as well.

I was born healthy, no-one noticed anything wrong with me untill I was about six months old. Then when my mom took me to the half annual control in child health centre the nurse wondered why I was still so small and suspected something to be wrong with my heart. She ordered my mom to immediately take me in a taxi to hospital in Rovaniemi, almost 300 kilometres south from home. Mum didn't even have time to call my dad who was working. In Rovaniemi, the doctors ordered us to fly to Helsinki the same day. When we arrived Helsinki, the childrens cardiologists had already received a phone call from the doctors in Rovaniemi telling that we were coming. From Helsinki mum finally called dad. The cardiologists had said that if we'd left a day later, it would have been too late for me.

I was diagnosed with congenital heart defect called tricuspid atresia, a single ventricle defect. Basically I was "missing" the right ventricle. I had to go through a heartsurgery as soon as possible. In the age of three or four years I had already gone through a series of heartsurgeries called Fontan operations. These operations didn't fix the defunct right ventricle, but made the blood circle as well as it could without it. Since I was six years old, I've had a pacemaker. In addition to the operations and the pacemaker I've always had medicine.

Almost twenty years went by without any problems. I lived pretty much like all the young people do. I hardly even considered myself ill at all. Then last spring, within a month or two, my health collapsed. I was exhausted and breathless, my stomach wasn't working and my feet and tummy were swollen. Finally the doctors found a massive thrombosis in my heart. I was rushed from Kuopio to Helsinki straight from school. In Helsinki I spent a day in the cardiatric care unit in Meilahti and met surgeon Markku Kaarne, who told me I needed a heart-transplant or a complicated TCPC operation. I had the amending TCPC operation the next day. Later I was told it took the surgeons twelve hours to operate. I spent two weeks in the intensive care unit and another two in an ordinary ward before I was let home. 

Now, a year later I feel better than last spring, but not good. I got depressed after the operation, but I think I'm getting better slowly. Otherwise I wouldn't be able to write this blog. My tummy is still swollen like soon-to-be-mums' and from what I gathered there´s nothing the doctors can do about it. I don't know what the future holds for me, but who does?  The past year I've been learning to slow down and to take one day at a time.