New and unexpected diagnosis of an atrial septal defect

[DancerRower]

I have just been diagnosed (one week ago) with a sinus venosus atrial septal defect after 35 years of no health concerns. This was an incidental finding first flagged via an X-ray for a totally unrelated rowing injury at the end of 2021 in which I was told my heart looked slightly enlarged but that it was probably nothing to worry about. Only now has the investigation been concluded. It feels like a bad dream and I am hoping the shock will give way soon to a more practical approach!

I have always been fit, and very active, both with dance (which was part of my career for a while) and also rowing (which I have done to a fairly high standard) and running/hiking/tennis. I was so shocked to receive this news and still feel like I’m processing. I have been told that I need open heart surgery, which terrifies me, for so many reasons. It was also put to me that a potential alternative procedure could be a Trancatheter Correction, but that this is a relatively new surgery.

At the moment I am feeling very overwhelmed and the weight of these decisions feel huge. I don’t want to put my body through such a traumatic procedure, unless it is absolutely necessary, but I also understand the risks of a newer procedure or indeed not having any procedure at all. In the end whatever decision I make, I will have to live with but this illusion of choice feels very stressful.

Although I have never had any obvious symptoms like fainting etc. I now realise that my symptoms might just be milder. I have been training for a half marathon, for the last few months, and have found it very very hard, far harder than 10 years ago. I was just thinking I needed to get my breathing right or just be more patient but since this diagnosis I have realised that over the past few years I have struggled at times with tight chest/breathlessness during exercise which didn’t feel as normal and has caused frustration, but I just always put it down to other viable explanations. Having read some articles I see that some other women my age started with similar mild symptoms, particularly noticeable when running. I am now realising that perhaps this condition has affected my ability in the past to move beyond a certain level. I would often put it down to needing to be mentally tougher or needing to get even fitter but it’s quite overwhelming to now see that it was my precious heart that perhaps couldn’t do the work. As my cardiologist said ‘we only know the heart we have’ but if mine is working twice as hard as a “normal” heart then perhaps I would notice a big difference post surgery.

I know there are lots more discussions to be had and choices to be made and lots of research to do to feel fully informed but if anyone has/is going through something like this I would love to hear your experiences.

This has also hit me particularly hard, as I had a very difficult break up only 4 months ago and moved out of our home just before Christmas. We agreed to have a period of space and no contact but we met up when I got this news and it was wonderful (his mum actually had open heart surgery in her 20s, so we are talking the 1970s there).

I don’t know yet if that relationship is completely dead, it certainly doesn’t feel it. There is a lot of love and we have been transformational for each other these past 3 years but for the moment the pain of that, coupled with this new diagnosis is making me feel rather alone and scared, despite having wonderful parents, friends and colleagues around me.

Any advice, experience or words would be greatly appreciated x

[10gingercats]

I had an ordinary ASD closed some years ago.I had probably had it all my life, but wanted to try and understand your varient.It sounds rare so you may have to search for a wide degree of info.People here will be supportive and help if they can and possibly the British H Found. nurse line.Ring them and ask questions....they are very knowledgeable. There are probably heart associations that may be able to help and even a specialist group online.Quizz your hospital cardiologists and get all the info you can before making any decision as to surgery or not.

[DancerRower in reply to 10gingercats]

Thank you for your reply. This is good advice.

[BeKind28-]

Hello

I can sense your brain is going a 100 miles an hour from your post which when I was told I needed a triple Bypass mine did to along with so many members that get a heart diagnosis so how you are feeling is not unusual

I know after keeping so fit you can think what has gone wrong but sometimes no matter how fit we are they do but what can be an advantage is that whatever treatment you have done by keeping so fit your body has every good chance of a good recovery

I am sorry you have had to deal with a break up to but it was good you could get to talk and whatever the outcome hopefully he will be a support if you need him

I would try and stop your mind going a 100 miles an hour by telling yourself today I do not have to make a decision what treatment to have done but give yourself time to get your head around this diagnosis

Then maybe when you have and you will make a list in order of what you have to decide first and just stick with that one thing the most important one on that list and when you have dealt with that move on to the next one

I have not got your condition but have had open heart surgery and it does sound frightening and I am a wreck yet it is not half as bad as you think it will be if you did decide to go down that route

I am sure other members especially those that have been given the same diagnosis will share their experiences with you when they see your post

I will put you the number on for the BHF Nurses if you think talking to them will help

Take one day at a time , one thing at a time and you will get through this

Let us know how you get on x

Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm

[DancerRower in reply to BeKind28-]

Thank you so much . This is so helpful. I appreciate your advice and your kind words. My cardiologist told me to email her questions (via her admin person/team) and also to schedule a telephone follow up appointment. I have emailed some questions and asked to schedule an appointment soon, but I have no idea how long these things take in terms of response time/new appointments etc. It sort of feels like this information is dumped on you and then there’s silence 😅

[BeKind28- in reply to DancerRower]

Hello

That is positive that your Cardiologist gave you her email as for how quick you get a response I think can vary when they get to see it and what time they have got but if it be a quick reply or you have to wait a little while I am sure she will get back to you

Same with the appointment it can vary which I know does not help you but what I used to think is if it was really urgent they would not have even let me home the fact they have and they know what they are doing I have to believe I am safe till they send an appointment out even though I know it is so hard not to want the answers now and not have to wait but this is when we really have to test ourselves to stay calm while we wait

I think the thing is this is their job so when they throw all this information at us it is like us telling someone they know nothing about but because we do we expect they have got it first time we have told them and same with the Consultants doing this day in day out it makes perfect sense to them and yet to us we are left with so many questions but as time goes on you will start to understand it more even though must seem so daunting and confusing right at this moment

Be kind to yourself they are really good at what they do and you will be looked after this is not the end of who you are or were this is the start of a new you and also it helped me to think how lucky I was they caught me on time some don't so there are positives there for you even though I know you are struggling at the moment but you will get there x

[Larneybuds]

Good morning.....there are so many of us on the forum who know about the fears of open heart surgery. I didn't have the same as you but was very fit and active after taking part in sport, going to the gym, healthy diet etc so my diagnosis of severe valve problems was equally as devastating. I think in being fit you look back , and like yourself realise that you had signs of problems developing but put it down to off days or perhaps pushing yourself too hard. Any heart diagnosis is scary and open heart surgery even more so but so very many who have gone through it are a lot older and a lot less fit than yourself. Do yourself a favour and don't use Google as your information provider....only use recommended sites. You can't go wrong with BHF information and the nurses helpline....or the best other information of course will come from your cardiologist or in reading replies to your posts on the forum from people with the same diagnosis or from those who have experienced open heart surgery. It all sounds daunting but the people who will be looking after you are experts in their field and open heart surgery is carried out frequently every day. Scariest part is the stage you are at and taking it on board and the acceptance. I was so scared initially but got it in my head that I couldn't change things and if the only way forward was surgery then it had to be done. Once I was in hospital I was extremely calm. As far as open heart surgery goes.... of course it's daunting, but once in theatre you literally click your fingers and are awake again...you have no awareness of having been asleep for hours....in fact I woke up and thought I was still waiting for surgery.I'm not going to tell you it's a walk in the park....it's major surgery but in being fit and healthy, it won't be half as bad as you think either and I'm sure your recovery will benefit from your fitness level. Also you have one big thing on your side....your age.

I'm sure your diagnosis has come as even more of a blow after your relationship break up but you must look after yourself now and be number one whilst you go through your health problem. It's not being selfish....it's being sensible. I know you will get some encouraging replies and hope they help you and take the fear out of it all somewhat. You will be fine....put your trust in the fantastic team that will be looking after you and have faith in what they will be doing for you. All the best and take care xx

[DancerRower in reply to Larneybuds]

Thank you for your helpful words and taking the time to reply. I appreciate it hugely!

[Larneybuds in reply to DancerRower]

You are more than welcome. Having experienced the fear of it all it's nice to be able to try to reassure others. Honestly, if you are fit and healthy....do all the pre op breathings exercises and do exactly what they say....plus stay positive, you will get through it ok. Afterwards...go to the rehab classes and again do everything you are advised to do. Just remember your recovery is your own personal journey ....it isn't always textbook as we are all different. Don't run before you can walk, rest and start exercising.....I'm sure you will look back on it all and just be pleased you had it done. Wishing you all the best xx

[Lonmayloon]

You might be find the Facebook group Cardiac Athletes (Pioneers of Sports Cardiology) helpful. A lot of very inspiring people in the group.

facebook.com/groups/cardiac...

[DancerRower in reply to Lonmayloon]

Thank you for this info, I will certainly check out that group

[LadyZ13]

Hello! Your experience has a lot of parallels to mine! I had no symptoms and my enlarged heart was picked up on a chest x ray. Large ASD diagnosed in December 22, OHS to correct in June 23. I spent a good month just spiralling. There was the brief prospect that the catheter closure might be suitable but in the end OHS was recommended so I went ahead.

It is absolutely huge. As someone who was also fit (bootcamps, running, cycling everywhere) and in their 30s it seems ridiculous and also not the time to be putting life on hold. I hated the idea of the recovery and being in pain. And it wasn't as bad as my imagination let it be. Waiting is the worst part by far.

If it helps, I started a blog to help process everything when I was diagnosed. The link is in my biog. There's a lot of naval gazing but also the practical stuff (I blogged through my hospital stay) and it kept me sane.

Happy to talk more if that would help you. It sounds like you've had a lot to deal with lately but know that you will come through it. Xx

[DancerRower in reply to LadyZ13]

Thank you so much for sharing this. It does bring some comfort to hear of similar experiences. I really hope all is going well for you now and I will certainly have a look at your blog

[LadyZ13 in reply to DancerRower]

Thank you. Since my surgery my heart has shrunk, which is expected, but it's meant my heart now isn't pumping properly on the right side. I'm a bit older than you and my stretching was very pronounced, and even with that they'd hoped it would just be 'normal' afterwards but that seems not to be. I had an MRI this week to assess the extent of the issue, now waiting on results. The good news is that I still feel fine and have made a good recovery from surgery. It may improve, it may get worse, but that's true for all of us with our health, we just don't appreciate the fact when we're younger and well! Keep us posted on your journey. So many people will relate to your experience and talking makes you feel less alone and less scared. Xx

[Confused01]

Hi,

I know 4 people who have had open heart surgery, triple bypass and alike.

Your diagnosis is a real shock to you and you need to process this until feeling calm (easier said than done I know).

I wanted to let you know that every person I know who had this surgery survived, was successful and no issues ongoing. 2 of them living a much greater age than many too.

Tbh their hearts are probably in better condition post op than millions of others . Think of it as a refit.

Remember you won’t be awake for your op…so you won’t know about it. It’s the thought of that’s frightening.

X

[DancerRower in reply to Confused01]

This is really good to hear. Thank you for your words!

[Overidge]

Hi I was in exactly the same position as you last June. I went to the doctors in April 2023 as I was breathless walking up a steep hill on holiday, in fact I couldn’t get up in the end! I went to the doctor’s thinking I had asthma. After a few tests they found I had a large atrial septal defect. I was referred to the Freeman and only two weeks ago had my first appointment for them to decide which operation I would need. They have decided that I can have the catheter procedure which I was relieved about.

I was like you, the right side of my heart was enlarged and I had a murmur. My feet swell which I have had since I was pregnant with my second son in 1990. But was told it was the lymphatic vessels in my legs that were the problem.

I was stunned that it was my heart and very upset at my diagnosis. I am now just waiting to hear when I can have the procedure. They said up to 3 months waiting list. I take diuretics to get rid of the fluid which have helped.

Have they said how big your defect is?

[Peileen]

Hi DanceRower, I understand your being concerned but sometimes investigations show up things that take us by surprise. I had an echocardiogram in 2013 which showed an Atrial Septum Aneurism. I had got the result printout. I went to GP who wasn’t too bothered because my heart was apparently beating with normal range stenght. I paid for a private consultation to get everything on the echocardiogram gone ghrough and explained. I was told that 20% of the population have these Atrial Septum disorders. The aneurism was a bulge in the thin septum separating the two atrial chambers. It was possible the bulge had passage through but not serious enough to 8nvestigate to find out. The cardiologist explained that a bulge could lead to clotting and he suggested a 48hr Holter. I got that on the NHS which showed some Paroxysmal AFib. I was put on Edoxaban anticoagulant and statins. A brain scan had shown a previous stroke from years before of which I had no recollection. I was 65 at the time and was to,d by the specialist that anybody of my age given a brain scan could show such an infarction.

Since then I have had a gall bladder removed and umbilical hernia repair at same time and also a shoulder replacement. The surgeon and anaesthetist took the heart situation and Paroxysmal AFib into account for both ops. Anaesthetists are highly skilled and dealing with all sorts of people with all sorts of health probs all the time. If you discuss with them any concerns I’m sure your mind will be put at rest. I had no probs with either operation.

I had fallen while decorating the house which led to test after test. Without those tests I would never have known about the Atrial Septum Aneurism or the small infarction on my brain. But thankfully I get medications to prevent any problems. Good luck and best wishes. I found these out in 2013 and am now 76 and had no symptoms of anything wrong.

[RumblingChest]

Hello, I got the surprise finding of an ASD last year after 55 years of health. I knew I had a murmur but it had never been followed up. In the end the ASD revealed itself due to its long term consequences - enlargement of the heart leading to a bout of PAF. I consider myself lucky to have been suitable for the catheter procedure, but in a smaller way I had to go through a journey of acceptance and decision making. I hardly ever take paracetamol, no body piercings and now I have a piece of metal in my heart. Everyone’s way of dealing with this will be different, but you may also want to have a chat with the Somerville Foundation. Best wishes for your health.

[Ems89]

Hello, I have found this post very helpful and has many synergies with myself, a 35 year old female, recently split from my partner who has also recently been advised I have an ASD. I and am currently awaiting the results from a Transospehigal echocardiogram to determine whether I am eligible for the catheter procedure or whether open heart surgery is required. It would be great to connect with you given it sounds like we are going through a similar journey at the same time. x

[PeriwinkleTwinkle in reply to Ems89]

Hope all is going well for you 🤞🏻

[g8vbd]

I had open heart surgery in Oct 2022 for a faulty valve and a very large ASD. I went in on a Wednesday, had the surgery on the Thursday and came home the following Tuesday. The only time I was in pain was when I coughed or sneezed, the rest of the time I was just uncomfortable. My advice for post surgery while you're in hospital - as soon as you can start walking.

I think that I'm a bit weird, as I wanted to have the surgery to make me feel better, (I was actually looking forward to it), which is has, I'm much more active than I was before the surgery, although it has taken a long time to recover and I think they said that it could be 2 1/2 years of recovery, so still some time to go.