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British Heart Foundation
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Heart condition in my twenties

Hello everyone! I'm Laura, and new to HealthUnlocked. I was wondering if there's anyone out there who is in their early-mid twenties and living with a heart condition - like me? I've never met anyone else in the same position (although do know of someone in their late twenties, and he has been a phenomenal source of support), and was wondering if you had any advice? Even if you're not in your twenties, I'd love to chat about it all - I'm pretty new to the cardiac condition world. Take care.

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Hi Laura. I was diagnosed at 31 (I'm 37 now) so a bit older than you, but still felt very young to have such a dodgy heart! I studied English Literature at university too and am hoping to go back to studying soon, if I can get funding for a PhD... Do you find your heart condition has much impact on your studying? I was always very last minute with deadlines in the past, cramming essays in the night before etc, but I think I'd need to pace myself a bit better if I do go back, can't see myself staying up all night (or past 9pm, ha!) these days... Anyway, just wanted to say hi and welcome. There are definitely a few people younger than me around here, so hopefully you hear from some of them soon too.

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Hi Laura! It's so great to hear from someone with an interest in English Literature too! I'm hoping to do a PhD as well, but I am going to take next year away from education (plus, the government are apparently going to start giving PhD loans from 2019 onwards, so...). I try not to let the condition get in the way of my studying - I am ridiculously stubborn to that end, and refuse to have help from my College and University (and to that end, I think I end up worrying quite a lot of people). But my academics are the only constant thing in my life at the moment, and I'd be gutted if I let my health get in the way. I'm super conservative with my hours etc., and don't tend to work past 7pm at night, just so I can mitigate the chances of feeling really unwell as term progresses.

Thanks for the welcome! <3

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Hi Laura,

Welcome. I have only just signed up too. I have a cardiac condition (blocked arteries) and hypertension. I started with it in my late 30s and I am now in my 60s, so you're not doomed yet.

What brought the heart disease on? Do you have hypertension (high blood pressure) or blocked arteries, mitral valve issues? What diagnoses have you had? Someone on here will have had the same thing.

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Hi! I have a cardiac arrhythmia, and it was found when the College nurse at my previous institution took my BP, which was astronomically high. I am a keen sportswoman, eat healthily, don't drink, and do not smoke - so it didn't make sense! No formal diagnosis as of yet, but I'm 15 months into investigations.

Thanks for the message :)

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There is no justice! I am the healthiest eater I know. I have been vegetarian most of my life and even when I wasn't I never ate much meat. I have always kept fit. If you look at all the advice about BP I a doing it. I should not have high BP but that's life. It's a bitch.

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Yep I am 21. Born with Congenital Heart Disease. 2x Open Heart Surgery 1x Device Surgery 2x Diagnostic Catheter.

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Hello - wow that sounds like such a lot to deal with, how are you doing at the moment?

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At the moment fine. Those procedures were over a tenth year period. Not all with in a short space of time. How are you?

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At the moment, I'm trying to juggle studying with my health, so it really could be better. But, at the same time, I'd say that my academics are the thing keeping me going, and the thing that legit gets me out of bed every single morning. I'm not sure where I'd be without it, despite the stress and worry that comes hand-in-hand with essays and dissertations.

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Yeah I am an undergraduate 2nd year reading Theoretical Physics. I get the balancing act. I was informed November of my First year that I needed my second Open Heart Surgery which was done at the end of my 1st year in July. It was fine my Uni was not very supportive but hey ho.

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Hi Laura, I'm 20 and had a cardiac ablation last year for wolff parkinsons white. Now I have another arrhythmia which is being investigated. I'm in the same position as you, just looking for some support and reassurance. Hope you are well x

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Hello! Thanks so much for the message. WPW is something I have been spoken to about, but I've no formal diagnosis as of yet. It's super frustrating because I'm now 15 months into all of this, after 21 years of a clean bill of health. It's hard to know what to think or do, but it's lovely to hear from someone my age with similar issues to face. I, too, need some support and reassurance. Hugs xo

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Hi Laura and welcome. I’m a lot older than you but I know exactly how you feel as I was born with congenital heart condition and lived with it all my life until nine years ago when I eventually had an AVR (Aortic Valve Replacement). As a very young child I was treated like cotton wool - not allowed to do sports, not allowed to learn how to swim etc. and it was a very miserable existence for a youngster. But when I became a teenager I rebelled and started leading a normal life and I’m very glad I did! I married in my early twenties, had two beautiful daughters and did everything I shouldn’t. Just live your life to the full and try not to let your heart problems get the better of you. When I was a child medical advice was totally different to what it is today and medical science has now changed so much so we are very fortunate. When I was a child the AVR operation that we now take for granted simply did not exist and was unheard of as was many of the treatments which we now take for granted, so don’t be too disheartened. It’s amazing what medical science can now do.

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Hi Rosie, thank you so much for your kind words. It makes me feel such a lot better about the entire thing. I was a well child up until the age of 21 when this all began, so it's been a bit of a shock to the system, on top of juggling my finals of my undergrad degree, and now my Master's degree. But I guess it's a learning curve - this is perhaps what it feels like to be an 'adult'. Sounds like you've had a phenomenal life despite the condition, though, which is something I aspire to. I have been told to be careful with sport etc., but I am a half marathon runner, road cyclist, and rower. And I don't plan on giving any of them up yet, so I do tend to ignore the advice offered to me. I relented, though, and gave up caffeine and alcohol (two very tricky things to let go if you're a student...!), but I do feel much better for doing so. Thank you so very much, once again - take care.

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Hi Laura.... I was diagnosed with heart failure at 32. Since then I have worked a full time pressured sales job while bringing up my child on my own oh and made sure I had plenty of fun holidays 😀.

I am now 56 and although there has now been further deteriorisation so now have a device implant... which helps my heart work better, I still have a full time job ( although now it's 9 to 5 and I run a social group which has 140 members.

My condition may not be the same as yours but just wanted to share that there is a good quality of life to be had after our heart diagnosis.

Do listen to your doctors.. .. there will probably a time of tests...tablets... etc But once all is in place go enjoy your life ..... and remember you then have the right protection to help your heart ( which people who aren't diagnosed don't have)

Karen x

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Hey Karen, lovely to hear from you!

It's nice to hear that something like a heart condition doesn't have to be the end of the world, or indeed the marginalisation of a full and exciting life, so thank you for saying as such! I promise to behave myself a but more and listen to my doctors, despite it being quite difficult at times to adhere to the rules they put in place. But I suppose it's all for the best, which is what we must keep in mind.

Laura x

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Hi karen

Just read one of your replies and I must say what a truly inspirational lovely kind open honest lady you are..

I say this while I'm sitting in A+E again after severe chest pain early hours of this morning.

Even though I had a stent procedure two weeks ago.

Wish I had your mindset.x

Rob

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Hi Rob

Sorry to hear of your current issues... I hope they have managed to sort it and the pains are nothing too serious. Could it be your medications?

It's easier to have my mindset after surviving for over 20 years.. and I have had my dark moments.. as we all do. But I had a light bulb moment early on when I thought to myself " I could worry about dying.. or focus on living" and I have to say that has been my mantra and has helped me move on and realise you can have a quality if life after heart issues.

I have recently had my lead fall out again!! For my pacemaker... which means I need op no 3 to try to get the lead in... to stop the deteriorisation and get me back to feeling good. So I am currently 10 weeks post op... and am out at my meal and theatre evenings... enjoying life for the next 4 weeks while I can... before my next op.

I have to hope and pray for 3rd time lucky.... but whatever happens the more I am having some fun now... oh and keeping my steps up to 6000 a day to keep me fit... the better my mental health is, going in for the next one.

I wish you a speedy recovery... but also remember to be kind to yourself and take care of you and ticker

Karen x

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I am a lot older than twenties but I do have a 23 year old granddaughter with a serious congenital heart condition. She manages her condition extremely well. She has lived with it all her life but it does not hold her back.

She takes Warfarin and self tests.

I would say she is fairly active, unfortunately her horse died so she isn't riding at the moment.

The employment situation isn't good.

She feels the cold more than most people. Having just had open heart surgery myself I now know how she feels.

She was told from early on that children are probably not a possibility.

I don't know your condition but Freya has a single ventricle, transposition of the great vessels and pulmonary stenosis.

Treated with two BT shunts and a Fontan procedure which gives her an artificial circulation.

There is not a lot of support for adults with congenital heart disease in this area I don't know what it is like where you are

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Hello - so sorry to hear about your granddaughter, it must be so tough for her and for you. I am glad, though, that it has not held her back in any way - that's incredibly strong and resilient, and something I'd like to be able to adopt in my own life too.

The support in my area for young people is quite scarce, but I am still at university, where the support has been truly exceptional (even though I'm quite stubborn and have not taken full advantage of all the help offered to me as of yet).

Take care.

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Hi Laura, I'm 23 and was diagnosed with a leaking mitral valve 3 years ago due to endocarditis. It's so nice to hear from people a similar age. When I was in hospital for 6 weeks, I didn't see one person my age in the ward & it definitely made me think, why me? Most days I don't even think about my heart and I don't let it stop me doing what I want to do. Have you just been recently diagnosed? Take care. 💕

P.s. I noticed you're from the Lake District, it's a small world!

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Hey! Wait....does that mean you're from the Lakes, too? It is indeed a small world! It's so great to hear from you!!

I get what you mean about thinking 'why me?'. I do often wonder that, considering I've never smoked, I am normal weight, not a big drinker (and now tee-total), and very sporty - so why does it make sense that I get dealt these cards, so to speak? I try not to think about it, too, and for the most part I am successful. I am determined to not let it get in my way. Thank you for such a lovely message. Made me smile!

Laura xo

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I was born with a heart condition and always thought I was born old because of it. I hide my heart condition very well as I become withdrawn wen things go wrong so ppl don’t notice.

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Hey! Thank you for the message, and I completely understand what you mean. I tend to withdraw when I am particularly worried about things, or when I'm feeling more unwell than usual, which is totally counterproductive. I have often kept it very quiet when I have ended up in hospital, despite living in a flat with other students - it's funny how people can live together, but individually live in their own little worlds, and perhaps don't notice the absence of another immediately. I, too, hide my condition (I work very hard at doing so), but it means that when I break down because of it, the people who want to give me a hug and help me are none-the-wiser about what's going on, and are consequently shocked to hear about everything. Hopefully one day soon I will figure out how to be more open about everything! Stay strong yourself, though. You've got this :)

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Hi Laura, our son is a fair bit younger than you (he's almost 11 years old) but has a bicuspid aortic valve, aortic stenosis and mitral regurgitation. He was diagnosed at 10 days old and had to have an emergency 'ballooning' (angioplasty basically) at two weeks old as we were told he had a month to live because of severe aortic stenosis. The procedure took it down to mild/moderate.

Last month he had a second 'ballooning' as his aortic stenosis had decided to go back to severe. Once again he's back down to moderate. They could have gone a little further but were worried about leaving a 'flop' valve. The hospital are hoping to get him to adult heart size with the one ballooning - then he'll have open heart surgery for a Ross procedure (taking the pulmonary valve to replace the aortic one then getting a donor one for the pulmonary).

We were told not to wrap him in cottonwool. Our consultant said 'when he starts school you'll have a panic attack, when he goes out on his own for the first time you'll have kittens and we expect to see you admitted when he leaves home! But he's a child and children climb trees, fall off bikes and get into scrapes and he has to do the same or his childhood won't be worth having'. Best advice I was ever given.

His medical advice is to do everything children do, swim, run about, do PE. The consultants at his hospital (Evelina, London) say that's the only way to see how the heart is doing. Our son knows that, if he feels tired, breathless or dizzy he has to stop - right then. His school knows that too so he's encouraged to have breaks in any task if he needs them. So far, no breaks. He's a slower runner but that's the only difference you'll notice. He's managed his own condition since he started school - he understands he mustn't push himself if he's getting any symptoms.

His friends all know he has a heart condition - in fact most of the school know - and he's very proud of his 'trill' (you can see the heart flutter sometimes). When he first started school he was showing everyone it! We've never held back from telling people - they are our son's safety net. If he becomes too ill to tell someone what's happening we know his friends will speak up.

He's off to Wales with the school soon for a week. Abseiling etc., The consultants are fine with it with the normal precautions of stopping if breathless etc., and the teachers will have all his recent discharge papers in case anything happens.

Every heart condition is different - every piece of advice is different. But our son is enjoying the life he has and we just learn to work around him rather than stick him in a padded box with a label saying 'heart condition be careful' on it. As his consultant said - he has to have a life worth living and he's having that.

Oh and he was thrilled to learn that Arnold Schwarzenegger was born with exactly the same thing as him and had a Ross procedure twenty years ago. He's now practising his best 'Terminator' impressions...

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This is such a gorgeous post - thank you so much for writing it. It has made me smile and feel a whole lot better about everything. I hope your son enjoys his trip away, and I wish him all the love and luck in the world 🖤

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Hi Laura,

I’m 28 and when I was 4 my parents found out I had mild aortic stenosis after I had an infection and ended up at the doctors’. I had a very normal childhood to be honest and was aware that I had to stop whenever I was out of breath - which most of the times I did but sometimes went a bit over - and just went on like that with my normal life until last summer. I was never able to do much sports, definitely not running as my heart couldn’t sustain that as an adult, but found my way in yoga and Pilates and different classes and was absolutely fine. In the last few years I ended up not being able to do much and somehow I knew time has some for my AVR to happen but I was scared and tried to postpone it until nature found it’s way; I was running for a train last summer m, had to run for ~50m and I completely collapsed 30 seconds after I got on the train, had a syncope and ended up in hospital where I found out I needed to start planning for my AVR. I was mega scared but somehow found it very reassuring that even if I pushed my heart too much, my brain knew how to shut down what wasn’t important to save me during the syncope :)

I’m having my aortic valve replacement today at St Barts in London and I am really scared of how it will change my life, even if I had congenital heart problems I never felt like I wasn’t normal or had to be very different and made the most of my 28 years, and now I know things will have to change and it’s scary but it’s for the best.

If you want to chat, let me know!

Cristina

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Hi Cristina,

First of all, best of luck and lots of love for today. Sending hugs your way.

Thank you for the message - it’s really warming to hear your story and I’d love to chat to you some more! Shall we direct message?

Laura

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Hi Laura,

Feel free to dm me, will get back to you as soon as I can! :)

Cristina

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Hope all goes well with your procedure and recovery, Cristina. There are lots of others on the forum (not me) who have had similar procedures, so do write a post if you have any questions/concerns over the coming weeks and months. Sending best wishes your way today x

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Hi Laura,

Thanks a lot for the warm message, I will definitely ask loads of questions after the op when I panic :)

All the best,

Cristina

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Hey Laura, im 43 and I have familial hypercholestrolaemia. A hereditary condition which means I have a sky high amount of cholesterol inside me. I find it very difficult to accept my condition and get very anxious about it all. Im on here to reach out to like minded people and support others if I can. My father had a heart bypass operation when he was my age and I want to avoid that as much as possible. I saw the after op look and his scars, not to mention how he could hardly speak. Feel free to message me anytime and all the best with your op.

Scott x

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not 20 just yet but i am 18 and living with very rare conditions as well as not so rare ones :) always up for making new heart friends x just drop me a message if you wanna chat x

Cheska

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