Beyond Heather's heart
Welcome to my page. My name is Heather and I'm 17-years-old. I live with my mum, dad, gran and 22-year-old brother in Manchester, England. Although I do have the usual arguments with my brother, I generally get along quite well with him.  I'd like to tell you my story in the hopes that it will help those of you without medical conditions to understand what it feels like to be 'different'. 

You see, I was born with a congenital heart defect. I was delivered eight weeks too soon, because doctors worried that had I waited around for the normal 9 months of pregancy, I might have died. So I came into the world early, but late in the day on July 12, 1984. At the time, my parents couldn't have known how much we were going to be visiting that very hospital as I was growing up!

When I was born, I was very colorful (not a good sign), with a blue tinge to my skin. Think about how red your blood is when you get a cut or a scrape. The red color comes from Oxygen that travels around your body in your blood to feed all of the cells--from your toes to your nose, so to speak! My problem was that there was a large hole in my heart, and the valves inside (like little doors that open and close to pump the blood to the lungs and then all around the body) had not formed properly. Because of that, blood from the right and left sides of my heart was mixing, not getting enough Oxygen, and causing me to become very short of breath very quickly (and, of course, to have the bluish tinge). The doctors told my parents that without surgery, I might die within 6 months (they must have been so frightened... wouldn't you be if you had a tiny baby with this condition?)

Fast forward the story to four months, when my parents decided that the doctors should try to fix my heart.  I was quite small, but the open heart surgery was successful (despite the risks for a little baby.)  As you can tell, I survived the operation and outlived my life expectancy by quite some time! (I'm sure happy about that one!)

Most of my teachers in school were fairly pleasant and helpful, although when we were learning about the heart, I didn't appreciate all of the glances towards me and comments like "I'm sure you don't need to go through this, Heather" or "why don't we ask Heather?".  Now don't get me wrong, I'm not ashamed of my heart condition,  I just don't want it declared over a loudspeaker in a classroom! 

I did have a problem when I first went to High School. Some kids saw me taking tablets and called me a druggie, which upset me quite a lot at the time. That was six years ago, and though it was terrible then, I'm much stronger now. I did leave that school to attend another one, so you can see how much their teasing affected me.

I just started college this year, and I'm doing pretty well, if I do say so myself. Though I have to visit the Cardiology Department quite a lot for check-ups, I've been doing it all of my life so it really doesn't bother me at all. I have to take quite a lot of tablets to ensure that my heart functions at its best, too, but I guess that is a small price to pay for living a relatively 'normal' life. One of the pills I take keeps my blood from forming tiny clots--pretty complicated, since I need to adjust the dose of this particular medicine frequently. I used to go to the hospital to have my blood checked, after which my cardiologist would tell me what dose to take, but now I can do it all myself--I even have a machine that analyzes my blood! If you are surprised, you are not was my mum! 

People are often surprised to learn that I have a heart condition as I look quite 'healthy'. When they see my scars, they look amazed and shocked. I tell them that they are my battle scars, and that I won the war! Although I've always been a little secretive about my condition, I realize now that I need not be, though this has taken me a long time to learn. 

At first I thought that I'd be treated 'differently' if I told people, but my friends have surprised me by being really supportive about my condition. We even have a joke about it now and again. Once an advertisement came on at the cinema for a credit card, and its slogan was 'wherever your heart takes you'. I muttered 'yeah, to the hospital' and my friend found this quite amusing. 

Alcohol is another problem at the moment because all of my friends want to go out to clubs drinking.  I'm not a party pooper, but I just don't enjoy loud, crowded places. Besides that, I can't actually drink alcohol because of my heart condition, so you can understand why drinking doesn't appeal to me as much as it does to them. Because most people don't actually know about my heart, they just think I'm strange because I'm 17 and not interested in alcohol.  My cardiologist once told me that it could kill me if mixed with my medications. My friends who do know why I feel uncomfortable around alcohol are great. They don't force me into pubs and I really appreciate that. Maybe when I'm a little older I might not feel so uncomfortable around alcohol, but we'll have to wait and see what happens later on. 

Living with a heart condition has made me see things differently. For example, I've always appreciated the little things in life moreso than it seems others my age do. Although I do have my limitations, I don't really think about what life would be like if I didnt have a heart condition. Friends often tell me how brave I am and ask me how I cope with all of the hospital visits and rules and medication. I guess that theirs is a normal reaction, but I don't like the way it makes me seem so different. I always tell them not to be silly. 

I owe my parents a great deal. As they have never looked at me as being 'ill', neither do I.  I know that I have a heart condition, but it's only part of me...not all that there is to me!  If you look beyond it, you will find a normal happy teenager (well, most of the time,  anyway! haha).

I think that people who don't understand what medical conditions are all about get scared--maybe they think that they might catch them--and as a result, they tease and tease. I try not to let them get to me. After all, it's my reaction they're looking for, and when I'm cool, they give up with it. I pity people who can't see past my condition as they must be very shallow. 

I met some really understanding people at college, and although it took a while, I eventually told them about my medical condition. Telling my secret felt like a huge weight had been lifed off my shoulders, and I no longer had to lie about hospital appointments. I hope that if you, too, have a medical condition, you will have the pleasure of meeting such understanding people.

One of my friends, Kate, has been outstanding. Although she understands that I am 'different', she never treats me that way, and I'll always be grateful for that. 

I love going to the hospital and seeing the doctor who told my parents that I wouldn't survive 6 months. It's a great feeling to know that I was right and he was wrong--haha! I've learned that you can't always believe everything that doctors tell you because sometimes they are wrong (after all, they are human too)! 

As a Catholic, I've always thought that God wouldn't give me a heart condition if he didnt think that I could handle it. And I've learned that being 'different' isnt always a bad thing! If we were all the same then the world would be a very boring place indeed.

Thanks for taking the time to visit my page. If you have any questions, don't hesitate to send me a note...Heather

P.S. If you'd like to learn a bit more about how the heart works, just click away:
The heart
About the hole in my heart
Great animations with the heart as the star!
Links to info about heart defects

"The flower that blooms in adversity is the most  rare and beautiful of all".
To the frog ponds
To send Heather a note
To the site map

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, Bronx 10468
Bronx, New York 10468

Last updated: November 16, 2004