Being born and living with a heart condition…

This is a pretty personal subject matter for a blog post. Being ill lately has changed my outlook on life, the way I think and even kicked started some must needed changes in my life. I  have a need to write about it…

TGA CHD HEART WARRIOR

 I was born with a congenital heart disease. It’s called Transposition of the Great Arteries. This is a condition which where the two major vessels that carry blood away from the heart — the aorta and the pulmonary artery — are switched (transposed). I had the senning procedure which saved my life otherwise I wouldn’t be here writing this blog post. 

Alot of people that were born around 1989 had either the Mustard and Senning repair. Both are very similar operations for TGA. In both, the surgeon creates a two-way baffle in the top part of the heart. This baffle serves as a bridge between the two sides of the heart. In a Senning procedure, the surgeon uses the patient’s own tissue to create the baffle.  Both are called “atrial switch procedures” because there is a baffle through the heart’s top part, or atria, which allows the blood to reach the ventricles. 

As a result, the heart needs to work harder to keep doing what it’s doing. It goes without saying that it comes packed with a range of symptoms and people can experience problems later in life such as Baffle leaks, rhythm issues and pump problems. At some point you are very likely to need surgery and the worst case outcome would be heart transplant. 

heart defect blogger

Growing up, I looked like a normal healthy girl only I wasn’t.

Growing up, there were certainly changes and things I needed to do different to others my age. Like having to take have my mouth numbed when visiting the dentist and occasionally wearing a heart monitor to school for 24 hours while logging my daily activities. Having a regular flu jab on yearly basis and taking antibiotics at sign of a chest infection.  A bonus was getting out of cross country in winter and watching everyone else get muddy. 

I always tried to never let my condition from stopping me from enjoying my life the way I want to. I was often tired and for the most part I got tired too easily. Id often get blue lips and hands (something that still happens). I had no issues until I was 8 years old, in which had balloon dilation of pulmonary venous baffle in which was resolved by surgery.  

I grew up having annual visits with a paediatric cardiologist at a specialist heart hospital. As a kid, I enjoyed these special heart checkups and I got time out of school (which was always a bonus) . I often asked to keep ECG stickers and watching my Echo although I could never make sense of it all.  After all, how many kids got to see ultrasound pictures of their own heart? or have Stickers placed all over for an ECG?

As with heart surgery,  I have a scar running across my chest area that shows even when I was wearing vline tops  I never let it affect me and most of the time nobody notices it till I say. It never really or has bothered me. Ive been through so much that I couldn’t care less about a scar. I call it my battle scar and it symbolises I am a heart warrior. 

Don’t get me wrong having  heart defect isn’t always bad…

BHF 9 MILE HIKE

I’m talking about the little negative things that come with having a heart defect. Its never really held me back. I wasn’t always on the side line when it came to things like sports. At school I was on the netball and football teams. I have taken part in a number of charity events including the 9 mile walk for British Heart Foundation. I just take things at my own pace. Of course, I always wish I could run marathons and not have to go for regular check ups but that is life…

I have been rather lucky and clinically well throughout my life. I’ve always been aware of any issues that have risen such as the impairment of the systemic right ventricle with mild tricuspid regurgitation etc – things that are all to be expected with my heart defect. 

It was only until recently I began to realise how serious my heart condition is and how much things can change without any notice.

Life ticks away and anything can happen at any stage. Life can change at any point but having a condition like this means your more at risk.

Growing up, I never really took much interest in my heart condition and often let my mam deal with it all including listening to the doctors or explaining to people what Transposition of the great arteries was.  It is only till I hit adulthood I began to realise that my family arent always going to be there. It was time I dealt with things on my own…

I have had to research alot about my heart condition and I’ve asked alot of questions on my last few check-ups, some even silly. It was only until my consultant was explaining about it, I began to realise how scary it could be including having a heart transplant – something not every 28 year old wants to hear. 

In May, Welcomed constant chest pain, shortness of breath, weakness, fatigue… 

This is one of the reason I haven’t been posting blog and been silent on social media as I’ve been in and out of hospital. Nobody has given me a clear indication of what it could be but I have been rest assured from a cardiac point I remain OK.  MRI and CAT scans, bloods, heart tapes for days and even an exercise stress test, you name it…

 I have been told it could be various things from Pericarditis to pneumonia to viral infections and even asthma etc. I am still not 100% well despite various medication, and seem to get every infection going because my immune system is at an all time low but I will get back on track and be able to move forward. 

ECHO CHD

Will always have some good days and some bad days. But who doesn’t anyway? Life is what you make of it with what you’ve got, good or bad.

One thing I learnt is that I have often took my health for granted. This recent health scare has massively changed outlook on life as well as made me want to change for the better if not for my health. I know a huge part that is having a strain on my heart and health is my weight. 

I have always struggled with my weight and lately I have gained a few stone over a short period of time. This is of course having a HUGE impact on my health as well as strain on my heart. Its scary to think at present moment, If I needed a heart transplant I actually wouldn’t meet the criteria because of my weight. 

Losing weight is mentally challenging especially when you’ve often used it as a comfort tool to cover your feelings. I have decided to set goals with challenges over the next coming months which I hope to blog about. I will shift the weight which will be one less worry.  

Being born with a pre-existing condition means it’s staying with you till death do you part.

Surgery worked its magic on me and I was one of the lucky ones. I will never allow my condition to hold me back and from this moment forward, I’ll never stop counting my blessings and I’ll never ever stop championing the NHS for saving my life.  This blog took alot to write because I am not very open about my heart condition and usually don’t bring it up until I need too. 

I’d love to hear your stories and if you have been impacted by Coronary heart disease or any pre-existing condition. Please leave a comment below or you can email me at nattsjourney@gmail.com

 

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50 Comments

  1. I’m sorry you’ve had to deal with your heart condition all your life! I’m glad that you haven’t allowed it to define who you are, and that you’re overcoming any and all obstacles that come your way. Keep moving forward!

  2. I love that you calle “battle scar”…that is what it is! It is a battle but its now a scar and most of the time scars goes away!
    I am inpressed that inspite of your heart issue you are very strong! Keep it up and dont give up of life!

  3. I think it’s really great that you’re setting some healthy goals to keep this condition in check. Setting and accomplishing goals for any reason can be really satisfying. I can only imagine how stressful being in and out of the hospital was.

  4. Oh wow I can’t imagine how hard it would be just knowing you have a heart condition, much less dealing with the chest pain. I’m happy that you’re not going to let it slow you down or keep you from doing the things you want to.

  5. It’s never easy to deal with an illness especially one that you’re going to have to carry for the rest of your life. I’m glad that you have a lot of good days and that you’re also focusing on your health. Keep it up.

  6. Thanks for sharing your moving story on your heart condition. I hope sharing your story helps others to learn more about these types of ailments. I love your positive attitude.

  7. Thanks for sharing your journey. By doing that you are not only acting more openly, which supposed to make it easier, but also showing a good example of hoping for the best and living your life.

  8. Thanks for sharing your story and being open about your condition. I think this can really help people who have recently been diagnosed with a heart condition or their child has. I have a friend who has a son with a heart condition and he’s had to have numerous surgeries and been in the hospital many times during his young life.

  9. When I was younger I lived with a family friend that had a heart condition. He had open heart surgery when he was born and had issue later on when it came to eating. He was unable to chew food and had to get them pureed for a long time.

  10. Aw hun 🙁 you have been through the works. Im sorry that you have a heart condition but what I truly find beautiful is how you never let it hold you back and despite everything you have been through you are a strong warrior who do deserves happiness. My foster sister has a heart defect too as she has William’s syndrome but luckily she is doing well so far x

  11. Thanks for sharing..i like that you are positive and live and love life inspite of the suffering. Also you said right we take it granted..guess we need to respect what we have and take care..
    All the best..

  12. Thank you for sharing. You have been through a lot. I’m sorry that having a heart condition makes things a bit tougher, but I am glad that you are keeping your head up and staying positive. I admire your perseverance and drive to succeed despite everything you have been through.

  13. You are a warrior girl! Your story is so inspiring…you have a health condition but it never stopped you from flying. I know it is not easy to live with heart condition but I want people to read your story to understand that being positive is so important to get out of a dark tunnel. Thanks for sharing!

  14. This is pitty!!! But you are so brave and you are a good example for all of us! My best wishes for more beautiful days to come and to bring with them amazing memories!

  15. Takes a lot of courage to share your story. And to live the best life you can! I live with a pretty serious condition too and you’re right, we’re bound for life. Sometimes it sucks, but most days I’m just happy to be alive. I think that’s what matters, right? We cherish each moment and are grateful for every happy day.

  16. You remind me of my Inay, that’s how we call our moms in the Philippines. She was also born with a congenital heart disease. But you know what, she was so strong that she was able to give birth to a healthy baby girl – ME – thru normal delivery. She was a single parent. Despite her health condition she managed to support our family. She was a farmer but I never saw her get tired of what she did. Even before the day she said goodbye, she was alone in the house. She had always been so independent but how I wished I was at her side when she had her last breath. Stay strong and positive. Always trust everything to God.

  17. You are very brave girl and full of life though you had a tough heart condition. I hope that God bless you with more health and keep writing inspirational things.

  18. You are one strong woman. What you have been through is a tough one but look at how you were able to cope! I wasn’t born with any illness or congenital anomaly, but I was born into this world, predisposed to have diabetes. I inherited the genes from both parents. I know it is hard, I understand, but my only wish for you is to continue to be strong and to not be limited by the disease.

  19. Thank-you for being brave and writing about your health. My goodness, I can’t imagine what it must be like to live everyday with a chronic heart problem such as this. In some ways though, I am able to relate to your story. When I was 16 years old I was in a terrible car crash and broke my back. That night in the hospital they told my parents to prepare themselves because they didn’t think I would walk again. By the grace of God go I and today I live without pain and very few limitations. I have a huge scar on my back, but never feel ashamed of it. Certainly there were things I wasn’t able to do in high school as I recovered, but I can’t even once remember a time where I thought to throw in the towel or give up on something. This life we’ve been given is the coolest thing ever and I’ve always wanted to squeeze every last bit out of it that I can. x

  20. I’m sorry to hear about your heart condition but you are so brave for going through and fighting for so many years. Stay strong and try to enjoy every small thing in life.

  21. I’m so sorry that you have to deal with this heart condition for life. I guess this hardship has turned you into this beautiful fighter that we all look up to. I’m so glad that you did not take it as a set back rather you got strength from it to fight with it. So proud of you.

  22. I think it’s brilliant that you wrote this, it might really help someone (or their parents) going through the same thing. I’m so sorry you’ve had to deal with this all your life. You have a great attitude towards it though and I really hope you’re back feeling 100% better soon.

  23. When I see the baby photos and I imagine the hard conditions, I could cry. Because a baby is something so precious and sensitive. Health is the most important thing in life. I wish that everything will be fine in your future.

  24. Thank you for sharing your story. My husband has a congenital heart anomaly too. He has a bicuspid aorta (normally it should be tricuspid). Surgery is not (yet) recommended because his cardiologist said that he is able to cope with the defect. Although he has to have his heart checked regularly, he does not seem to mind lacking one heart valve flap. I admire your strength and your positive outlook despite all you’ve been through.

  25. I’m so sorry that you are having to live with that heart condition but your outlook on life is perfect. We will all have some days that are good even in the midst of bad things that we deal with every day. Its how you live your life that makes all the difference. Keep positive throughout 🙂

  26. Your strength and courage is admirable! I had a friend a few years back who had a great condition he never knew out. We only found out after his sudden death at age 31.
    Thank you for sharing your story and bringing courage to others.

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