After a random faint doctors investigated my heart and have found that I've been living (in total ignorance!) with a congenital heart defect. They suspect it's a pulmonary valve stenosis and say that the right side of my heart is enlarged. I've never had any issues with my heart before and am totally blindsided by this.
The next step is to wait for an MRI to investigate further and decide what interventions are needed.
Has anyone else experienced anything similar? How did you cope with the sudden news? I'm finding it really difficult to work and am pretty terrified right now. Any advice, signposting to other resources, or shared experience would be enormously welcomed, thank you!
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LadyZ13
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Hi LazyZ13. Yes I was diagnosed with a bicuspid aortic valve and severe aortic stenosis last October. I thought I just needed an inhaler and felt like the rug had been pulled from under me.
I googled.... Bad idea, joined this forum, sought counselling, joined a dedicated Facebook group, spoke to my GP. A combination of all those helped, but it truly was an awful few weeks coming to term with it.
Hi Joanne - thanks for being my first reply! This is my Day One and I hope I'll get used to this new normal but I'm really struggling to concentrate at work and it's a high visibility, high stress role that I've only been doing for six months. They know I'm phasing my return today but the load will be back on soon. The lack of information (or even a definite diagnosis) is really hard. I guess I just have to get through this as best I can... Very glad to have found this forum as a starting point!
That sounds so tough Joanne, I'm so sorry. I've read a few of your other posts and I can see what a challenging journey you've had. And it inspires me; I too hope to be OK and recover from any surgical interventions. It's good to hear that the surgery, if needed, does happen eventually. I'm sure you being fit and healthy prior to diagnosis was in your favour; and I hope the same is true in my case.
I feel very lucky to have means to get help and private health insurance for bits and pieces, plus a family member who is a consultant cadiologist. I find they tend to lean away from the congenital stuff if that's not their specialism, but she knows people at Papworth where I'd be treated.
Thank you so much for sharing your story. I hope we can stay in touch! And you can call me Zoë! x
Id say try not to panic Zoe but easier said than done, as is the urge to punch people who aren't going through it and say "you'll be fine". Yes you will eventually, but at this moment in time you are probably in total crisis and that's not helpful.
I wish I'd had access to private healthcare, but to be honest I'd have still ended up in the LGIs ICU regardless as I was in there 12 days waiting to recover before pacemaker was inserted.
Yes, while it'll speed up scans etc the treatment itself will be NHS I think as our heart unit here in Cambridge is so well regarded. It's good to have means but I'm also worried I'll end up on unpaid sick leave or unemployed if I can't manage the pace of this job alongside a heart condition. It's early days. I'm still waiting for the post to bring the copy of the letter yesterday's cardiologist is sending my GP. I don't even know who my GP is as I've never needed to use them! This is so mad; it's a whole new world isn't it?
Hi. You can have private surgery at Papworth. My CABG x 3 was done there on a Saturday so as not to block/use nhs facilities during the week. Had I waited for nhs appointment I probably wouldn’t be here now. I realise how fortunate I am to have access to medical insurance.
That's helpful new information, thanks OldSpider, my cousin didn't think her colleagues would do any/much private work but a relief to consider it might be a possibility if I felt swift intervention was paramount. I'm very glad it got you through! I had a friend (also aged under 40) die this February on the waiting list for heart surgery which had got me worried, but I think he was incredibly unlucky.
I had a heart attack completely out of the blue around 4 years ago. I'd had no warning signs, no symptoms. My reaction was very much like yours. Unfortunately there's rarely any help with your mental state after you've been given such news. I asked my GP to tell me just what it meant for me and how bad it had been. He was a great help. I suggest you do as someone suggested and phone the BHF nurses who will try to explain everything to you. Whatever you do, do not google. There's a lot of utter rubbish out there
Thanks Joanne, I'll look those up. Mine's (probably) a pulmonary valve stenosis and I've seen a few groups out there but mainly for children (and quite American, which is a whole different kind of healthcare routlette). All of this is so very much appreciated - thank you ! x
sorry to hear about your congenital heart defect. Not nice to be told about something out of the blue, that you have been born with. Mine is epsteins anomaly. Which was found in February. I don't know where to start with me as iam still in shock and worry. Iam being seen at our guch unit which is clinic for for congenital heart defects. However it is still hitting me every day. Thoughts of why me and naturally the worry it might pack up all together. I am on medication to reduce blood pressure and a duretic. To remove any water. According to all my tests I have had. I seem to have good heart rhythm, with no electrical issues. Had mri and ct scan which basically found no other issue's except the epsteins. And currently no heart failure. Which is why iam on lisinopril an ace inhibitor. Mentally iam still coming to terms with it. Not easy though. Currently seeing a councilor for the anxiety. I feel for you and all you are going through. Unfortunately I don't have a magic wand. But the biggest issue is the waiting. I suppose you take no news as good news. But as my cardiac nurse says iam on medication now and iam In a better place than I was before I knew all this. I have to admit I easily burst into tears. But a good cry does help. I hope you get through this. All the best.
Hi Felly, thanks for replying - I'm really sorry for your situation and how heavily it's weighing on you. It's a big thing to process, especially if your heart health showed no issues. Rationally we know it's better these issues are discovered and treated but of course it's normal to feel you want to return to the time of blissful ignorance. Has the counselling helped you? Would you recommend seeking some out? Thanks again for sharing, take care, Zoë
thanks for the reply. Has counseling help. Good question. The trouble with all this is I get people say you have had it all your life so you can keep going? It's not easy. I suppose the heart defect explains a few things from the past where I just assumed I was not fit. But I have managed to do many wonderful things. Can it be fixed? Don't know may be too old. Can I continue to live with it, with medication, don't know. Its questions like that which are still up in the air at present. So we come back to, does therapy help. Its some one to talk to. To try put things into perspective. Like you said I would like to go back to blissful ignorance. But am I in a better place now that I will be on medication and regular checks.? But then am looking too far into the future. I have got to live in the present. I think you need some therapy just to get your mind back to the present. To move forward. At least the therapy that I have had, has basically concluded that I have anxiety and have had it all my life in small doses. It is hard though. I hope you find an answer.
I think taking things one day at a time is probably a maxim of anyone with a heart condition - we can never know what might happen in the future, so there's little to be gained from worrying about it, however hard it is to put it to the back of your mind. However much this isn't a new situation (being congenital!), it's new information and it's a lot to handle. If you're an anxious person, doubly so! I was suffering from workplace anxiety these last few weeks but this diagnosis really puts things in perspective... I hope you keep finding coping mechanisms that work for you. All the best.
yes I had a therapy session today. It does help. But as she said to me today it is down to me to change. There is no magic wand. As I have said the heart issue is the icing on the cake regarding my anxiety. But as she said I am still young and reasonably healthy so I just need to move forward a step at a time. All I will say is watch your anxiety from work pressures and blood pressure. But the anxiety fix has to come from within. Medication can help but anxiety. But it is still from within. And iam not very good at it. Any way as they say onwards and upwards.
I'm glad the therapy helps, but I guess talking over your problems doesn't make them go away - all you can control is how much you worry about them, and that can be a real challenge. If there were a magic wand we'd all be insufferably cheerful all the time! I hope you notice incremental improvements in your ability to cope. I'm thinking of you.
hi ladyz13 I too was blindsided with heart trouble I had never been to the doctors for about 25 years working as a builder with no health issues other than the odd cold etc .I had been at work on a Monday not feeling to good with shortness of breath I put it down to maybe a cold coming on as a lot of it going about at the time anyway as the week went on I was not getting any better I just thought it was maybe a chest infection .come Sunday after much nagging lol from my partner and step daughters I agreed to phone the nhs 24 service they sent an ambulance to check me out I thought I’d get some antibiotics and that would be that .they decided there and then to take me into hospital wow .turns out my mitral valve had packed up my lungs were full off fluids I spent 4 days in local hospital being stabilised then taking to another hospital for an operation really at the time couldn’t get my head around it but the care I have received has been great no such thing as a silly question you will be in safe hands .I’m now 16 weeks post op and getting slowly back to normal .honestly you will be ok. Best of luck
Hi Gussy, thanks for the reply. It's quite something to go from a normalish health issue to discovering you need an operation on your heart. I think it's easy to forget how common heart disease can be, even in healthy people. I'm sure the care will be comprehensive when it comes; it's the uncertainty that's so hard to manage. Wishing you a continuing smooth recovery from your op and some peace of mind.
that must have been scary. Glad you have come through it. I think that we can look at this as a positive, that we are the lucky ones that something has been found. AdmittedlyI would not wish it on any one, but how many people are walking about oblivious to any issues? The number of fit sports people who suddenly have issues.
Thank you so much BlackCatSooty, that's extremely encouraging. I really appreciate you sharing your experience! How long did you have to wait for the surgery? Any tips for staying sane as you wait??
I waited just one month. I had the three outpatient tests after admission to the hospital, which I think is rare. Covid was at its height of disruption so going to and fro would not have been an option.
I was scheduled to go to Colchester but it closed. Then Basildon but it closed. Then West Brompton then Harefield, but they were all closing. My surgeon was quietly going mad. Eventually the Cromwell had space, lots of space, so they took me in. Usually filled with the rich elite but the rich elite weren’t travelling in to the UK so the hospital was very very quiet.
Waiting for the op was by far the worst part. I had become very unwell with extreme fatigue. The long journey to hospital was surreal, but as soon as I walked through the hospital doors then all the stress and alarm melted away. Cardiac staff are specialists and knew exactly how to handle me. I had my own room and after a while I grasped that the staff were popping in every hour or even less. Maintenance staff, kitchen staff, cleaners were always in and out, not to mention the layers of medical staff.
I bought myself my first i-pad and the dummies book. That occupied my mind. I am a practising Christian and decided I would read Revalations in one long session. I did read it and still don’t have a clue what Revelations is all about.
Sooty is not me, he is my big black cat. He knew all was not well and made a fuss of me, he also started cosying up to my wife, as a first reserve. I do love my cat.
Once in the hospital, I was asked if I would mind the op being observed. No problem. After the op a couple of the observers were itching to tell me what had happened. I politely said I really don’t want the details.
So how to pass the time for you Zoe. Get or keep fit. Put your finances etc in apple pie order. Recovery is many weeks. Maybe read a book. I do not read very well, but if you can then borrow or buy a book. Much better than magazines.
I think most, if not all, of us here have received a cardiac diagnosis out of the blue. In my case it was heart failure at age 63. The term ‘heart failure’ doesn’t help, even though the cardiologist told me that it wasn’t as bad as it sounds ! We probably all go through the ‘Why me?’ phase, but heart disease is much more common than people think. I also made the mistake of asking Dr Google but was quick to find Healthunlocked, fortunately. After cardiac ablation treatment, I’m now pretty much recovered and stable albeit with the addition of a pacemaker. It could have been worse. Heart surgery is very routine these days - particularly valve replacement- and I’m sure there’s no need to worry.
Hi, what a shock for you not surprised you feel all over the place. I gave congenital heart disease also but I’ve known about it all my life as had surgery as a child. It actually happens more often than people think getting a congenital heart disease diagnosis in adulthood.
The key things I would suggest would be
endure that you are treated by an Adult congenital heart disease (ACHD) team there is one at Bristol
Look at Somerville heart foundation website
Speak with an ACHD specialist nurse.
Whilst you have all this going on can you get reasonable adjustments with work. If you have occupational health departments speak with them.
Try and take some quiet time each day. Be kind to yourself and let people help you.
Thanks ScoobyDoo, this is really helpful advice. I know the Papworth Hospital in Cambridge near me has an ACHD unit and it's to them that I'll (eventually) be referred. I hope I can get access to a specialist nurse through that unit.
Thanks for the Somerville suggestion, I didn't know about this, I have signed up!
I work remotely from home and was expected to be back in work the day after my diagnosis. That has been hard - I feel there a bit of a lack of understanding about how this is affecting me. I'm not 'ill' ('so you've had this all your life, and they just need to do some more tests...?') but it's been a huge shock and affecting my ability to concentrate. I work in a high stress job that for the last 6 weeks has required over 50 hours a week and I'm pretty sure stress was the cause of my original collapse. I wake up in the night more worried about work than about ACHD!
Really glad to have found this forum, it's already been a huge help - thank you so much again.
that’s great you will be referred to ACHD team as they are far snd away the experts in this.
As for work I know what you mean, sometimes working from home you end up doing far more than you are contracted to do and despite thus it’s still seen by some as an easy ride🤦♀️.
Your health is your priority and although it’s easy to say about work life balance you really need that now more than ever.
This potentially may fall under equality act (don’t freak out I’m not suggesting you are disabled ) but it has been a huge help to me regarding reasonable adjustments for balancing work.
Trouble is often with heart issues we look fine until we are not eg collapsing breathless etc so it’s hard for others to fully grasp the enormity of what we are dealing with.
If you have occupational health dept try and speak with them as they were a massive support to me.
you are right iam with the adult congenital team at norwich. And fortunately work have been good as we have a occupational health team on site. Yes I think congenital problems are quite common. But I do wonder if the new technology of ct scans, echo scans and mri scans are so good that they pick up alsorts of issues. Iam not saying that this is not a good thing. But some of us oldies who slipped through all them years ago are now being found. But the congenital problems are part of you and who you are. But it is still a shock. I suppose what hits me it to think that iam damaged goods. But that's the trick to stop feeling sorry for you self and live.
Me too. Just over a year ago I went to the doctor as I had been feeling very tired and thought it was due to several family traumas which had happened almost simultaneously. She detected a heart murmur and several appointments with a cardiologist later I have a diagnosis of Hypertrophic Cardiomyopathy and advised that my three sons should also be screened for the condition. The shock has been unbearable and, as I am a lot older than you, I feel as if my life as I knew it is over. I don’t mean to be over dramatic but anxiety now hovers over me every day. I almost wish I didn’t know about it as there doesn’t appear to be any remedial treatment and ignorance, as they say, is bliss
You will find lots of helpful people and advice on this forum and it sounds as if you are normally fit and healthy which is really good. I wish you lots of positive healing and pray that you will be supported in your journey. Oh and, please don’t use Google!
Hi Liz, thanks for the reply. Wow, that is a scary situation, I'm so sorry you have gone through this. Have you been advised to make lifestyle changes as a result? Do you have access to medical advice to help you navigate what this means practically for you? That might help alleviate the anxiety? The advice to stay away from Google is really wise, thank you! Take care x Zoë
Hello Zoë. I was hoping to reassure you however your reply has comforted me. I have not found the medical advice or support which I need but maybe I haven’t formulated the right questions yet. Still floundering a bit.
I can see that lots of lovely responses have come your way and I really hope that this encouragement gets you through the rough times xx Liz
Hi,sorry to hear this, i'm 54 when I was 15/16 I was an international swimmer and swam for GB in the 1984 Olympics in LA, later that year I went to a swim meet for the Commonwealth games in 86 but during the time trials out of the blue I collapsed whilst Swimming as though i'd fainted/passed out in the pool. After lots of tests by top Drs Specialists I was diagnosed with a enlarged heart now this was covered up by my step dad basically saying the heart is a mussel and will be enlarged because of all the training I did and when you train you build mussels up, anyway the specialist put me on Inderal Beta blockers to control blood pressure hence swimming career ended as they're classed as steroids. I was on these till I was 48 and my GP said everything seems fine and started to reduce them and eventually put me on a newer Blood pressure medication, whilst I was between changing I started with chest pains and just thought it was indigestion but I got it checked out after nagging from the wife and had to have a Angiogram that's when I found out I had hereditary heart disease from my mum and needed a triple heart bypass which was successful but still need to carry my GT spray in case of any chest pain. But I would keep getting your diagnosis checked regularly and hopefully your under a cardiac consultant. Hope things go well for you and stay safe.
Hi Stumpy21, thanks for your message - it's good to hear from people with prior good levels of fitness and valuing being active. I'm gutted not to be able to back to smashing my lifting PBs in the gym! I also wonder if the enlarged heart is in part because I've been active my whole adult life and used the heart a good amount. Sadly I lost my mum 4 years ago which means there are a lot of questions I can't ask her but I don't know of any heart disease in any blood relatives so suspect this case isn't hereditary. Your story sounds like it was a lot to go through but I'm so glad you've made a recovery. The advice is so helpful - thank you!
I had a similar experience in August 2019. I was found to have aortic stenosis with an aneurism of my ascending aorta. This came out of nowhere as I had recently completed 30 years in the Police. I had even passed an enhanced fitness test for several years due to my particular role at that time.
My issue stemmed from a bicuspid aortic valve from childbirth.
All has generally been ok post op apart from two years later discovering that my aortic arch may also have an aneurism. I’m currently awaiting the outcome of the CT scan with contrast dye.
So sorry to hear your story and I wish you well. The surgical teams are great and normally very experienced. Good luck.
I was recently diagnosed with hypertrophic cardiomyopathy after blacking out whilst visiting my dad in hospital. I was taken straight to A+E, admitted and didn't see the light of day for another 3-and-a-half weeks!
I've been fitted with an ICD but I'm trying not to let it dictate my life. I've lived with this condition for 44 years without it being an issue and there's no reason why it should be an issue again. YES, be mindful of it and live as healthy a lifestyle as you can but don't let it stop you doing the things you enjoy (in moderation, of course!).
Hi crhys, thanks for sharing a little of your story - it helps to hear from people who are still relatively young as it's quite a thing to get your head around alongside a very busy working life! I'm trying to take comfort that it's always been there and this is just about monitoring and managing and that I'm already looking after my body so actually not much real change is likely to be needed. I might start flossing, though. Who knew that dental health and heart health were related??
Hi LadyZ13. I was diagnosed with a fenestrated hole in my Atrial septum in November 2019. It is 0.8 cm x 1.8cm in size with strings across it. No symptoms until I reached the great ager of 69 when I started getting breathless when walking uphill and pushing wheelbarrows on archaeology digs. Covid got in the way but I then had an TOE (camera down the throat) to check it, and an MRI. I was getting to the state where I could not do 400 m on a slope without stopping, had my holes patched via my groin veins in August this year at the Liverpool Heart and Chest Hospital and 4 weeks post op I could do 7 km in the Derbyshire Dales! At my 8 weeks check up my heart has re-modelled it's self! My interventionist said they are finding loads of older people with congenital heart defects these days. They thought I might also have Pulmonary vein stenosis but nothing was found. In my area (North west England) they have the CHD Network with major hospitals seeing patients. There should be one in your area lhch.nhs.uk/our-services/co... I found it a bit of a slap in the face when first diagnosed as I had been very sporty, but took a deep breath, pulled up my big girls pants and thought positive.
I know how you are feeling because I was there myself in June last year. From a healthy 53 year old working in a Bank on the Saturday, had what I thought was indigestion, to feeling a bit off it on the Sunday to a heart attack in the early hours of Monday. Stabilised over 4 days to be told I have acute coronary heart disease and I need a bypass in the next week to survive. Transferred on the Saturday to Castle Hill, Hull and had a sextuple bypass on the Monday. Turns out I was born with it , inherited ifrom my Mum who had a heart attack at 52 followed by 2 bypasses in her lifetime. The Surgeon said I was lucky I survived and was amazed I had presented no previous symptoms. He said if I had smoked, lived unhealthily etc it would have been 20 years earlier ! Couldn't have any visitors due to C and I was absolutely terrified. Fast forward to today, I am recovering well, have lost weight, changed my diet and walk 3 miles a day with the dogs. Luckily I had critical illness cover and a great Bank works pension scheme which I could take at 55. I quit my job end of June when the sick pay scheme ran out and as I turned 55 this month, am just about to receive my first pension payment. I certainly didn't feel lucky at the time but these forums helped me through and looking back, I was, as I survived and the medication etc means it can be managed. I have got a second life now and it probably will get me in the end, but now I know I live with it, I can mitigate the risks and enjoy my hopefully long retirement. Best wishes to you.
I had a GP just check my lungs as I had a chest infection and after he'd had a listen he said casually ' how long have you had your heart murmur?'. I was 55, a runner, no symptoms, always disgustingly (occasionally smugly) healthy. Echo confirmed Aortic stenosis. I was gobsmacked but assured it was mild and might stay that way forever. 5 years of annual checks later and I took a call during a day I was working from home to say it had become severe and I needed surgery. Very mild symptoms I had just put down to turning 60 and I felt like I'd just been told I might drop dead at any second. I'm nearly a year post surgery now. It's not a walk in the park but not nearly as bad as I feared. I think the worst thing for me was being robbed of that casual confidence we all have in our bodies if we're lucky enough to have been healthy. Maybe it's not a bad thing to be more mindful that health is something to be nurtured and cherished. This forum is a godsend. You realise it's actually quite common. Lots of emotional support and practical advice.Welcome to the club!
Hi Bookworm, thanks for coming forward to share your experience. I completely relate to your feeling of being robbed of confidence in your body. Until now it had done everything I have asked of it and as everyone in my family has been blessed with good heath I've no experience of health scares or concerns in that area.
Four days post-cardiologist conversation and I'm not feeling too bad. I don't have a formal diagnosis yet, still waiting on referral to the ACHD unit, but as I feel fine (other than a really sore arm still from the CT cannula last Thursday!) it's all a bit surreal. I too am on that 'could be a monitor situation / could be sudden surgical intervention' seesaw.
So good to have found this forum for support and advice and I really appreciate people sharing their stories. It helps normalise what feels like a totally weird situation! Thanks for the welcome!
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