for young people with childhood heart disease.

Kristie's Story


Written by Kristie, 5 October 2015  |  Atrial Septal Defect (ASD) 

Hi my name is Kristie, I am 21 and was born with a heart condition called Arterial Septrum Disorder (ASD). I always ask myself "What would my life be like if I never had this condition"? Well, I don't know but I'm sure it would be different. Where would I be? Who would I be? These questions have always gone through my head but it's an answer I'll never find. When I was born my parents were told that I had a heart murmur and that it should go away with age but it didn't and when I was 2, I had my first open heart surgery. Since then I have had leaky valves,  cardiologist appointments every 2 years and would get breathless constantly which I always thought might have been because of asthma. About five or six months ago, the breathlessness got to the point where I struggled to walk up stairs at train stations and sometimes even to the mailbox so I went to my local GP and he sent me for an ECG. It showed abnormalities which he thought were because of my leaky valves so he sent me to see a cardiologist. When I saw the cardiologist he sent me for an ECG (to put in my medical records) and a ECHO,  which showed that one of the valves weren't opening and closing properly as well as it should be so when I had my appointment with the cardiologist he told me I would need another operation. At first I was told I would need three valve replacements but he sent me for another procedure (Transophageo echocardiogram TOE for short) where I had to be sedated and have a camera put down my throat to get better pictures of my heart. It showed that there was a membrane partially blocking the aortic valve (the main valve of the heart) so I was sent to visit the surgeon. He told me that it was a possibility that I would need at least one of the valves repaired and the membrane removed but he wouldn't know until he opened me up and had a look. I was told it would be six to eight weeks before I would be booked in for the operation but about a week later I received a letter in the mail from the hospital stating that the operation would be on the 10th of August this year. I had been given an appointment at the pre-admission clinic on the 31st of July which would take about four to five hours. Finally, the day of my operation came.  I was in the operating room for only an hour and half and when I woke up I had my family and best friend there visiting me. When the surgeon came around he told me that he only needed to remove the membrane and clean it all up. I was in CICU for two days before being transferred to the ward and was in hospital for four days. Now it has been almost two months since my operation and I have had appointments with the surgeon and cardiologist. Both have said that everything is looking well and that I'm looking heaps better. The surgeon also said it will take longer for everything to heal because of the scar tissue that was already there and I might need another operation in another 10 to 15 years depending on how everything goes.

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When everything seems to be going against you, remember that the airplane takes off against the wind, not with it. Henry Ford