In this post I am talking about something really personal that I want to share with you. This is a bit different from what I usually write about but I felt like this is something I should share, I also hope that this post brings light to congenital heart diseases and helps people who have them to deal with them. In Finland off all the children that are born in year around 1% have a heart condition. In UK 9 out 1000 babies have congenital heart disease. Congenital heart disease is a general name to problems that appear in all heart and main vascular structures. I am one of those babies’ who was born with a heart disease, more specific Tetralogy of Fallot (TOF). It means I was born with a congenital heart disease that has four components.
1) Ventricular septal defect (VSD) – a hole between the right and left pumping chambers of the heart.
2) Overriding aorta − the aortic valve is enlarged and appears to arise from both the left and right ventricles instead of the left ventricle as in normal hearts.
3) Pulmonary stenosis − narrowing of the pulmonary valve and outflow tract or area below the valve that creates a blockage of blood flow from the right ventricle to the pulmonary artery.
4) Right ventricular hypertrophy − thickening of the muscular walls of the right ventricle, which occurs because the right ventricle is pumping at high pressure.
Like in most cases of TOF I was operated before my first birthday and all the components were fixed. That means my parents and I spend a lot of time in a hospital during my first year. The operation wasn’t the end of my hospital visits. I have been going to a hospital for check ups ever since I can remember. So I have become familiar with MRI’s, blood tests, ultra sounds, EKG’s and other medical experiences.
I consider myself lucky; my heart disease hasn’t impacted my life too much. Yes I have had to go to a hospital to see doctors but considering what some people have to deal with their disease I am lucky. There are some things I am not allowed to do because of my heart. For example I can’t ever become a professional athlete, I can never run a marathon and I can never serve in the army or become an astronaut. I can’t know would I have ever become an athlete or if I would have gone to the army because I have always known that it isn’t a possibility. Now when I think about it, I would have liked to have gone to the army, but it’s what they say: when you can’t have it you want it.
Even though my heart condition was fixed when I was a little girl I have had to go to check ups to see if my heart is working like it should be. It has become a routine so I don’t stress about those meetings, the staff is nice and professional and I feel like they care about me. So going there doesn’t make me anxious or scared and I hope everyone who has to go to a hospital regularly has a kind, warm and professional doctor and nurses because they make the unpleasant tests and meetings better.
And I have never gone alone to those tests or meetings because even though I am all prepared to go there and be checked sometimes you still can get cold feet, even if it’s something you have been doing all of your life. I always bring my dad with me even though I am 20 years old I want him to be there. He has been there since the beginning and he understands what the doctors tell and sometimes when you are in a situation that makes you anxious, or if you get bad news you may not remember all the things that you have heard so I find it reassuring to have someone there with me. These days he sits in the waiting room while I am having my tests taken and after the tests he usually takes me out to eat or he buys me something sweet to eat. For some people it may sound odd, but having him there makes me feel better so I ask him; every time.
Ever since my surgery the doctors told my parents that there was always a chance that I have to have another surgery because my heart may need to be fixed again. Two years ago my doctor told me that a new surgery was needed. Even though I had known that it was a possibility that I had to go under the knife once more the news were still like punch to the gut. The thing that made it so difficult to deal with the news was the fact that the doctor couldn’t tell me when I was going to have the surgery. It could be next year or in five years time, but I don’t know, I am living in the constant state of not knowing and sometimes the not knowing is the worst.
It took me a while to wrap my head around the fact but eventually I manage to do it. It wasn’t easy, and sometimes I still worry about the surgery. Of course I do, who wouldn’t? One day it will happen, but I have come to a terms with the fact that there is nothing I can do to change it. So instead of worrying about it I do my best to take care of myself and enjoy this moment because there really isn’t anything I can do. There are times when the surgery is on my mind and it’s the only thing I can think of but most of the times it’s just small voice in the back o my head telling me to take care of myself. What has helped me to deal with all this are my parents, they have been absolutely wonderful. They have walked this path with me and it’s been a big help. Do they worry: absolutely. But they know that I am taking care of myself the best way I can. And they also know that our doctors are the top of the line so I am in good hands.
So for all of you who have some kind of condition, whether it is tetralogy of fallot, panic attack disorder, diabetes or something else I want you to know that it’s okay to feel like you were cheated. It’s okay to be sad or mad about your situation. But the fact that you are trying and you are surviving this life should be something you should be proud of. It’s not always easy to be proud of it but it’s important. You are important and that’s all that matters. And you can always reach out and ask help; there is nothing to be ashamed if you do that. Remember it!