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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

My Journey with an ASD

Hey all,

I'm new to this forum, I found it through facebook and I thought I'd come on here and share my story of how I found my ASD and what it's been like through the process of fixing it to now, after closure.

When I was born, I had a heart murmur like many new births out there. The doctors told my parents that the hole would close on it's own eventually. Needless to say, it didn't. For my entire childhood and teen life I didn't experience any symptoms whatsoever. I went to university to get a higher education but didn't know exactly what I wanted to do in life. However one dream that I always had was to be a professional firefighter. Towards the end of my university schooling, it became more and more clear that being a firefighter and helping people was what I wanted to spend my life doing.

After I was done university, I was accepted into a college pre-service firefighter program to train towards my goal. When I first started the program, I knew that I would have to complete the firefighter physical test (called the CPAT) in order to proceed past the first semester of the program, but I would also have to do that test in order to get hired on to a department. Firefighting is obviously a very physically demanding profession, so my body would really be put to the test. When I did the test the first time, to my pleasure I passed. However a week or two later I started feeling a heaviness in my chest when I woke up in the morning. That was literally the only symptom I had so I didn't think much of it for a while and tried to ignore it. Over time, it was ever present and I decided that I should probably go check it out to see what it was.

I got a chest x-ray and it came up clear (originally). However a week later, the doctors office called me and said "There was a tiny abnormality I'd like to discuss." I then found out about my ASD. My hole was small, but present, and over the next year I went for a number of tests from MRI's to transesophogeal echocardiograms. Eventually they discovered my right side of the heart was becoming enlarged and they needed to plug the hole. From the time I discovered my ASD to catheterization closure with a amplatzer spetal occluder was a period of about 1 and a half years.

I remember sitting in that hospital bed, frustrated with the world, thinking why me, and waiting for my chance to get out of there and start building my strength back up. It was a very low point. As soon as I was cleared, I started going back to the gym and working towards my dream. The symptoms I felt after closure were mainly many palpitations from extra heartbeats, after the operation it was many a day, sometimes several in succession. The first month or 2 out of ops, I had several occular migraines which scared me at first, but stopped after the first couple months. For those who haven't had them or know about them, essentially your vision starts to sort of crystalize in your peripherals and it seems like your vision that isn't straight ahead of you is watery and occluded. The first time it happened to me I thought I was losing my vision and was very nauseas. The next times it happened I wasn't sick at all because I had looked up what it was and knew it was temporary. I was lucky because I only got 1 or 2 migraines, I hear many people get a lot of those after surgery. Those were my only symptoms. My chest heaviness all but disappeared. The symptoms I have now, 3 years later, are pretty much only heart palpitations. I probably get on average about 3 a day randomly, but none in succession anymore. It's something I always notice, but have gotten used to and live with. But I digress...

After a lot of hard work, dedication and perseverance, at 28 years old, I've achieved my goal and was hired by the City of Toronto and am now a professional firefighter. It was a long trying road with many bumps along the way, but now I'm doing what I love to do and I'm living proof that an ASD is just a hurdle that we can all jump in getting what we've always wanted to achieve. I think that being an ASD survivor doesn't mean we have weak hearts. Rather it means we have the hearts of lions because we fight in the face of that adversity to overcome and dream. Never believe you are any less that what you can be, keep fighting and remember that there is no "I just can't." Instead, think of it as "So how am I going to do this" and keep going.

This was a great post to share. Thank you.

Fireman Dan,

Thanks for sharing your amazing story. It brought a huge smile to my face. You had your ASD closed a little before mine in May 2010.

We are very pleased to have you as a member of our community.

Thanks for your story. It really helps to know what others have gone through. I am 43 and have had severe symptoms for the last month. They found out the cause last week and mine will be fixed on Monday. Now we are finding out there are others in my family. I’m so glad to hear of someone who fought like a lion. Right now I feel like a sparrow who can’t fly looking forward to soaring.!!:slight_smile:

Thank you, Dan, for this post. I'm 56, had closure through open heart surgery 4 years ago, and have experienced numerous symptoms pre- and post-surgery. Nevertheless, I found your story very encouraging, particularly the "So how am I going to do this" line. It gives my thinking a boost in what can sometimes become a discouraging process. And congratulations on becoming a firefighter!

What a awesome story. You will bring hope to those who are struggling with this. I agree...we are strong and must stay positive. I know that my state of mind has brought me a long way since my stroke and ASD closure.

All the best,

Sylvie

Story of my life! Mine was not discovered until I got a routine chest XRay for my annual physical exam and from there, a battery of tests were being ordered on a weekly basis. My heart bling is also the Amplatzer and Im a year and a half out. Doing good so far and back to working as a physical therapist.

Thanks for your great story and congrats on becoming a fire-fighter in Toronto.

I had my ASD closed in Ottawa 13 months ago. All is well with me and I am glad it was done. I am 46 and knew I had an ASD since birth. They used the Amplatzer device & I too have heart palpitations pretty often but I am used to it.

Good luck with everything.

take care

Lyn

Rebecca: Thanks!

John: Thank you, I'm happy to have stumbled across this community!

Stace: Good luck! My thoughts will be with you on Mon for your procedure, I'm sure it will go fine and you will be that soaring, singing sparrow in no time!

mtyree: Thank you! I feel like my procedure was minuscule in comparison, my hats off to you for keeping strong through what can definitely be a difficult process!

Syl: Thanks! All the best to you too!

Holeyguacomole: Our stories do sound really similar. I'm happy to see it's not as rare as when I first started on this road.

Lyn: Thank you, the palpatations are kind of funny, they come and go for me but as you have, I've learned to live with them as well. I go in for my 3 year checkup in a month.

Thank you all for the kind comments and welcome!

Fireman Dan,

Thank you for sharing your amazing story!

My ASD was also closed with the amplatzer device, on December of last year (2011). Already had my 6 month follow up and everything looked great. I also get extra heart beats once in a while, but I am now used to them. :)

Take care and all the best!

Jessica

Its a beautiful story,,it has givin me some comfort,I just had mine done October 9th.My name is Sharney I am in here under my husbands name,by useing his email they would not except my name because of the my husbands name on the hotmail I am not the best computer operator,so be it.as long as I get to know there is more people that has gone through this too.I am still scared,I own a little restaurant in town and I want to open back up soon,,just waiting to find out when I can go back to work,there r so many things I am affraid to do now,the doctors didn't tell me much after surgery,I got released the next day by the nurses with not knowing what I can or can't do,I am going to my sons wedding soon,,and I don't know if I can even have a glass of wine or any kind of cocktail,I just wish they took a little time to let me know a little something,,but the doctor in a meeting,I am so happy for you and I am praying to God I will be telling my success story too,,All the best...Sharney

Hi Lyn, what are these heart palpitations like? What do you do at that time to take care of it? Sorry to hear about them.

I get severe discomfort a lot of times, burning feeling and pain. But like you brave people here i too live with it. :slight_smile:

Its gonna be a year for me in august since i got the surgery done.

Wish you all the best.

Ashish