Just got on here to talk to some folks. I was born with a heart issue and was wondering how others may feel about it.
I have never spoken to anyone with the same circumstances as me, so most of my life I've felt pretty alone with my problems. I want to make connections, so here I am :).
Hey Leodhas. Sorry to hear the way you're feeling. I'm sure many people on this site will be able to help. Many of us who have heart conditions are born with them, even if they only get discovered in later life. For example, I was born with a bicuspid aortic valve, which led to aortic stenosis and then eventually two years ago having to have the valve replaced.
You don't say what your circumstances are, and so I realise they may be very different from mine, but do talk/ask away as I'm sure there are many 'hearties' on here who will be only too happy to listen, help, sympathise and offer advice and reassurance.
Take care and look after yourself.
Nic x
Hi Leo. You have come to the right place. Lots of folk of here with similar experiences so hope you find the forum helpful. You can of course also talk to a nurse at the BHF if you need help or advice.
Take care.
Ron.
Welcome, Leodhas, you definitely have come to the right place.
I have Rheumatic Heart Syndrome (I also have a few other heart conditions) from a childhood bout of rheumatic fever and was diagnosed with the RHS when I was around seven - not a 'born with' condition but I'm 64 now and so have had what I call a lifelong heart thingie.
Being young with a heart condition is never easy even if the condition is relatively mild the way mine was and is - it's lonely being the one who has to be carefully watched, it's frustrating being the one who has to stop (insert fun activity here) when chest pain or breathlessness or...happens and everyone is looking at you to see if this time is 'the big one'.
How old are you, what is your condition and how severe is it?
Ahhh, so we are damaged/dodgy heart valve buddies? I was born with a narrow heart valve, most likely due to the low quality of breathing I had when being born. Well done for making it so far!
Thank you for your empathy. It's been hard trying to relate to others when you're the only one with the "heart thing" in your community. I relate with the chest pain and breathlessness, I have a very caring and protective mother and there were a lot of things my friends did that I wasn't allowed to participate in fully (namely football).
I'm 23. I got my valve replaced with a mechanical one when I was around 11 or 12. Since then I've had arrhythmia issues and a few jaunts of suicidal tendencies. At the moment I'm seeing the doctor once a year to get an ecg and sometimes an x-ray. I struggle to get through full days due to sleepiness and restlessness.
A mechanical replacement - so you're on Warfarin, then? Do you have your own testing equipment or do you go for regular checks at the surgery?
It is difficult at times (understatement, I completely empathise with the 'Why bother, what's the point?' darker days). I dealt with it by subversively rebelling - I'd give something a go then very quietly back off if I became breathless and/or chest pain. I was surprised at how much I could do once I became 'rebellious' and the adults in my life were likewise surprised. I've had a rather good quality of life once I took the approach of 'Let me give it an easy start and let's see how much I can tolerate.'
There are limits, of course (for example I stupidly fell pregnant against medical advice including my surgeon husband's - nearly died with that first one but then managed another live delivery a few years later under strict medical supervision) and it is always best to check with the medics first, but trying things (carefully) was a life changer for me.
As you've written you have had some suicidal moments (I call those 'darker days' or 'dark patches'), I have to ask (and there is NO need to answer) if you've had any cardiac counselling. I did find counselling very helpful, I went with cognitive behavioural therapy (CBT) and it's made a huge difference for me.
Yes I'm on Warfarin. I used to travel a long distance to go get it checked, and then eventually I got a machine. I don't have a machine anymore, since it broke. I just go to the nearest town to get my blood checked.
Wow, great stuff.
I'll take that away with me for sure; don't be afraid to try!
I haven't had cardiac counselling but I have had a lot of counselling through the years. CBT has been used to help me multiple times. That's lovely
Much love,
Lewis
Hi Leodhas,
I was born with a Tetralogy of Fallot, 69 years ago. These days they usually repair this condition in the first year, but back in 1951 there were no heart-lung machines so no repairs as they do them now. I had poor exercise tolerance (so no sports) and was cyanotic ('blue baby'), so it was quite evident I had a problem but I learned to live with it.
It was finally 'fixed' when I was 27 years old and I have been more or less symptom free ever since and from then onwards people were not even aware that I had a heart condition. I don't know how old you are or what your specific problem is (and of course there is no need to tell us that), but the point is that there are many people with congenital conditions, either 'fixed' or not who live relatively ordinary lives.
Hi Fallot,
Incredible, 69 years ago? I had a heart murmur at birth too. That must've been real daunting. You made it to 69, nice! I have had poor exercise tolerance as well. My brother was a cyanotic baby as well.
Wow, that's nice. I'm 23. I was born with Mitral Valve Stenosis and had many operations afterward involving an ablation, heart valve replacement, removing of 2 surgical wires, heart restart and arrhythmia correction.
How did you tell others about it when you needed to? It must've been even a lot harder to let people know about your difficulties back then, having an invisible illness and all. Thanks for your support. It's one of these things where I never quite reached out for support in this area of my life. It's always been me and my mother going through it on our own.
Well, before my 'repair', it was not really 'invisible' as I was cyanotic and had very poor exercise intolerance. So as a child I just told people I had a heart defect and that I was born with it.
These day I don't tell people at all, as I am basically functioning normally (after my cardioversion a few months ago, see my reply to izzyg43 below)
Hello Fallout.
I have just read your reply to Leodhas, I hope you don't mind me answering you.I was also born with Tetralogy of Fallot in the 60's lol. You are the first person to whom I can relate to. Glad to hear you are well. Have you had other issues as well eg, arrhythmia's, stents?
Regards
Izzyg
Hi Izzy,
After my repair in 1978, I was basically asymptomatic. Whenever a doctor put a stethoscope on my, they could of course hear all sorts of stuff, also because I still have a remaining VSD (they obviously did not close that properly). I even stopped going for checkups. Then early this year I had poor exercise intolerance, a persistent cough and weight gain. Went to the GP, who did an ECG and sent me through to the cardiologist (whom I had not seen for over 20 years). He did another ECG and an echocardiogram and found that I had an atrial flutter. Also a small aortic regurgitation which he was not worried about. Put me on a diuretic (weight gain was fluid retention), beta blocker and apixaban in preparation for a cardioversion 4 weeks later. Cardioversion was successful, beta blocker and diuretic stopped, but I am still on 2* 5mg Apixaban.
Another ECG about 10 weeks after the cardioversion still shows sinus rhythm, but with some ectopic beats (which they tell me not to worry about). I now sort of 'self monitor' by means of exercise tolerance (I walk quite a lot) and daily weight monitoring and looking at these I am fine (feel better than I have for a long time, actually).
I was born in the Netherlands (where the repair was done), then moved to South Africa and finally to the UK. The whole cardioversion episode was when I was caught in a lockdown in South Africa. Have been back home in the UK since early June (the latest ECG was done here). Still waiting to see a cardiologist here, they want me to see one who specialises in 'adults with congenital heart disease' (ACHD). As I am not an 'urgent case', I guess an audience with the Queen is more likely than getting such an appointment. Which is a bit disturbing as at the moment I only have my GP to turn to. And only 'phone consultations. Other cardiologists have told me that the stethoscope is their best diagnostic instrument, beats all the 'electronic stuff' (although they of course also use that).
What is your cardio care like?
Hi there Fallot!
Thank you for your reply, it is really nice to hear from a person with the same condition ( not that's it great to have it in the first place lol ). I have had four open heart surgeries thus far, hopefully the last. Here in the u.k I have been monitored yearly from birth and I am under the guch team( grown up children with heart disease ). I have had stents 2 cardio versions and so much more I can't keep track. The latest is I need to have a ct scan but I am putting it off as I am needle phobic. The last conversation I had with cardiologist she mentioned a pacemaker and I said " well let's hope not ". On the usual meds, beta blocker, warfarin ect. I think I am doing really well considering. I just wish that I was told about what to expect eg, Atrial flutters/atrial fibrillation, because as you get older due to scarring that can happen. Now I have got swollen ankles and tummy.
Did you have any shunts when you had your repair? and do you get blue lips and fingernails?.
Hope you are settling back into the U.K even though it is through a pandemic.
Take care stay safe
Izzy.
Hi Izzy,
Gosh, 4 open heart ops, that's quite something! I just had the one.
As is the case with many heart (and other medical) issues, ToF can be relatively easy to repair or pose more of a problem, both initially and as a prognosis.
As far as one can be called 'lucky' with any heart condition, I feel I certainly am more lucky than most ToF patients.
To start with, I did not need any shunts immediately after birth or later. I survived quite well (although cyanotic and with poor exercise tolerance) until age 27 when my GP sent me to a cardiologist who said that my body was trying to adjust to the condition by making extra red blood cells which would eventually cause blood clots. He put me on anticoagulants and told me that I would probably live to be 30 but certainly not 40 if I did not have the condition repaired (which was not possible in 1951 when I was born). An angiogram showed I was a good candidate for repair, so there we went. Now one of the main variables in the ToF is the 'type' of pulmonary stenosis. It can either be the valve itself or something they call 'indifibular', where the pulmonary valve itself is OK, but there is a problem just downstream of that valve. The latter was the case with me, a bunch of 'fibres' behind the valve prevented the valve from opening properly, these were removed and the valve was not touched (if the valve itself is affected it is sort of 'cut' and this often gives rise to a need to have it replaced later in life). My VSD (which is of course part of the ToF) was repaired in such a way that the aorta was properly positioned from the left ventricle and I was done (although there is still a remaining VSD, unfortunately). I am no longer cyanotic (blue lips and fingernails). When a friend visited soon after the op, she mentioned that I looked like a big pink baby (only having known me in my cyanotic state).
Just one more thing: you mention swollen ankles and tummy, which very much sounds like water retention. Are you on diuretics ('water pills')? When I had my atrial flutter I had those symptoms as well and the water pills did wonders! I lost 5 Kgs of 'water' in 24 hours. I now carefully monitor my weight (every morning) as a sign that I am still in sinus rhythm. The GP and cardiologist agree that this is a reasonably reliable way to self-monitor my heart function.
Hi Fallot!
Wow you know your stuff I don't even know what VSD stands for lol. All I know is that TOF affects the 4 chambers.
I am so naive I thought for some reason that TOF affected people the same but as I said I have never met anybody else with it to compare ( you learn something new everyday ). I think my blue fingers and mouth is due to circulation problems. After my last operation 11 year ago like you my lips and fingers were pink, even the consultant made a remark. I had my first op in Glasgow aged 3 and a half months in 1965. It is great how things have progressed in treatments over the years for us hearties. I think mine is the pulmonary artery itself as I have not heard of indifibular. I was on water pills and I did lose a bit of weight but I am waiting for a blood test before they will give me more, I ran out of them about 2 weeks ago. I am really needle phobic and I will only allow one nurse to draw blood and trying to get appointment is like getting blood out of a stone lol, might get one done during half term week 26th October. I am quite lucky though at least I have had a relatively " normal life " I have always been able to work, drive and some strenuous exercise but now I am getting a lot older I must say I feel the weight of it at times.
Take care
Izzy
Hello Leodhas.
I was born with heart disease. When I was young nothing fazed me and I continued to carry on as if I was like the other children. As I have gotten older it is a bit lonely at times, not because of having no one around but having no one to relate to with heart issues. when you are surrounded with healthy people it can be hard at times. I am here if you want to talk.
Regards
IzzyG
Hi Leodhas,
Yes, I was born with heart problems. I had a hole in the heart and a murmer. As I got older, it was discovered I had a leaking Aortic Valve.
I had Open Heart Surgery to have a VSD repair done when I was 11 years old which fixed the hole between the left and right ventricles. They didn't do the Valve replacement at that point as it wasn't really that bad.
Fast Forward to 46 years nold and I'm now nearly 10 weeks since I had further OHS to replace the Aortic Valve, repair the root and have a ring put on the Mitral Valve.
It is very daunting and to be honest, I wish I'd found this forum sooner - along with a Facebook group I'm also a member of, but I didn't find anything until after my second operation, but everyone is so helpful and lovely.
Take care!
Yeah man, glad to see you've made it through all of that, Much love.
Hi Leodhas, was born with bicuspid heart valve and am now on path to replacement surgery. I have found this forum unbelievably helpful in allaying my fears around surgery. It can be daunting I know but Kentucky of people here to help. Jon.
Glad to hear that Jon, Happy that you have found this community :).
Was supposed to say “plenty of people”. Stupid predictive text!!🤣
hahaha I thought maybe that was a phrase you use in America or something lol
I wish. Sunny Manchester!!
Hi. I was apparently born with a a bi cusps aorta valve. Had no idea until I went into hospital from an abscess removal when I was about 40. The anaesthetic told me before my op. I have subsequently been having annual checks on the progress or calcification of the vale. I was quoted shocked but it hasn’t hindered me at all. At the same time I am acutely aware I may need a new vale as I get older.
Hi Netie. Same here. Was diagnosed at around 35yrs of age after 15yrs in fire service.
Was asymptomatic till mid March this year. ECG in July with not great results so now having pre-op tests. Can’t say I’m looking forward to it but now I’m on the road to surgery would prefer it sooner than later.
Hi Templar. What were your symptoms? On my last echo check my cardiologist said there was no little change to my valve but I have had a few strange feelings little palpitations and a light bobbling of my heart and I asked him was that the start of the valve calcifying. He thought not but I wore a monitor for 24 hours and he thinks it may be atrial fibulation so I’m waiting for his reading of the recording. I went privately so should know this week. I’ll keep you updated.
Hi netie54. First signs were shortness of breath when running. Have had the odd heart palpitation but nothing else till March this year.
Has got gradually worse since then. Pain in chest when running (stopped now!) shortness of breath when walking up steep hills.
Hi there I’m 28 and have had heart problems from birth lots of open heart surgeries as I’m sure you have yourself love to hear more of your story and experiences if you’d like to chat message me anytime 😄 hope your keeping well Kirsty
Born with CHD
Knee relacement with Heart failure.
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