My CHD was misdiagnosed for anxiety AMA

[MyWildOliveGoose]

Just like the title says really.

I was born with a very rare congenital heart disease that was completely missed all through childhood. When I became an adult and started displaying progressive symptoms my GP kept telling me it was just anxiety. I finally got a diagnosis and have just recovered from open heart surgery to completely reconstruct my heart.

Ask me anything.

Strange topic for AMA. What is there to ask?

I actually posted it as lots of people on instagram TikTok etc have asked questions about my story; my misdiagnosis etc what my symptoms were, how it was picked up, tips for better heart health, support networks for people with CHD.

It can be extremely isolating, if it doesn’t resonate with you, then you needn’t comment but it may help someone else.

My POTS & IST were initially diagnosed as anxiety too op though less serious sounding than yours.

What were your symptoms and how was it finally picked up?

Glad you finally have a diagnosis and hope you recover fully from surgery quickly. X

I'm glad you got the right treatment at last.

Are you angry about it? I would be.

What's your life expectancy now?

Is it lower than if you had been correctly diagnosed earlier?

Glad you're ok now. What form of congenital heart disease do you have and how common is it to be undetected until adulthood?

I am so sorry that you were misdiagnosed too, it’s extremely stressful. I think I will need lots of therapy when I’m ready to process it all. How are you doing now?

My symptoms were most the key ones.. heart palpitations, chest pain, shortness of breath etc but as time went on I began having presyncope which is the feeling of fainting, constantly needing the toilet lol and they told me I’d trained my brain to think I needed to go every 5 minutes and extreme fatigue, I would wake up and it would feel like I hadn’t even slept. My quality of life was really really poor.

it was finally picked up because one day I was walking up a flight of stairs and I doubled over with chest pain, and couldn’t get to the top no matter what I did. I was helped by a colleague to get back down, and we went straight to A&E. I said “I don’t want to be dramatic as it may just be a panic attack but I think I’m having a heart attack..” a doctor came immediately, did all my bloods - normal haha but then listened to my chest and said “actually, there is a murmur there. I think we need this investigated.” From there an echo was done, and there it was.

I am absolutely furious now.

it was hard because at first I was cross with everyone, doctors, my mum, my nan, teachers anyone who had a huge influence in my life that never noticed something wasn’t right. I always had issues keeping up with my peers, it was hard to do PE, and I would fall asleep a lot in class or when doing homework, I fainted a few times, I’d have horrific migraines accompanied by heart palpitations and it was very “get up and get on with it” lots of discipline etc and now it all has a reason.

Now I’m just cross with all the doctors that I presented with symptoms that ignored me if I’m honest. I went to A&E with two very big cardiac episodes over a span of 4 years and to 111 out of hours 35 times in 4 years with cardiac symptoms and to my GP over 100 times in 4 years, and every single person said “you’re having panic attacks” “you’re anxious” “is there anything stressful in your life at the moment.”

My life expectancy now, is completely normal as my operation was 100% successful, but when I was diagnosed I was told if I didn’t have the surgery within 2 years, my life expectancy was extremely low and that I would go into heart failure and need a heart transplant. Failing that, I would have died.

If it had been diagnosed earlier, I would have been monitored throughout my whole life, my heart wouldn’t have the life long damage it does now and my operation would have been sooner. Life would be easier.

Do you think your misdiagnosis was a result of you being female?

Are you going to sue the NHS? (I would want to but i probably wouldn't, but I would completely support you either way.)

Jeez I’m so sorry to read this.

Did you honestly get disaplinned for feeling like shit and not being able to carry on?

Did they try and treat your “anxiety” with medication and how would that have affected your CHD and heart function?

Thank you 🙏🏼

what I have is called Ebsteins Anomaly, only one birth in every 100,000 live births will present with this and it makes up less than 1% of all CHDs, so very rare.

Now, it’s easily picked up during routine scans, and then sent for specialist echocardiogram imaging. So it’s very unlikely for children now to be missed if they’re born with this. Unfortunately I was born in the 90s when scans weren’t great, and it seems a handful of people my age are diagnosed later in life, some people older than me too.

It also wasn’t very well known in the medical community before the 90s as that was when a doctor invited the corrective surgery for it, in 1993. Before then it was considered untreatable. Even now, there are only 3 surgeons in the UK that have done the surgery, one hospital in Germany, and two in America. There are other consultants that know about it, from all over the world, are knowledgeable and can manage it from their point of view, but surgeons are far and few.

you say the A & E doctor heard the heart murmur,
did no one listen to your heart in all this time?

I don’t know, I think my misdiagnosis has a lot of factors, one being female yes. We are just hysterical haha.

I have been thinking about suing, it’s hard, because really I don’t want to, but something in me sometimes says.. but this isn’t right and it can’t be swept under the rug.

If I had £1 for how many times doctors listened to my chest in the duration of my life.. I’d be rich.

Yes, I really was disciplined but again, I grew up in the 90s 00s, so it was different then.

They tried to treat my anxiety with lots of medication and it was weird because I could never take it. Something stopped me every time. I would go and pick up my prescription so they thought I was taking it and then take the label off and return it to a different pharmacy 🤣

I asked my CHD doctor if I had taken it would it have had an effect and she said yes it would have slowed my heart down which could have resulted in dangerous arrhythmias, increased symptoms and strain. So it’s lucky I never did really.

What do your parents say about it? Are they supportive now? Do they feel bad they dismissed your symptoms and didn't push harder for a diagnosis, or do they accept what all the doctors were saying?

can you make your condition much more known at all to stop this happening to other people?

They’re very supportive now, and I think they regret not picking up on my symptoms more. But we are all first time parents at some point. I’ve let that go. It wasn’t their fault, they’re not medical professionals and it was a different time. It’s not like now where we are all so hyper aware. We see other people’s stories online and resonate with them etc.

On that note, can I just use your thread to point out that private scanning has become widely available in very recent years and anyone who finds themselves in a similar position now would be able to find an ultrasound scan, hopefully somewhere near them, for about £250, which would have identified a physical heart defect. (I've seen the inside of my husband's heart many times, detail is astonishing!).

That’s what I’m trying to do, with this post, with social media, and when I am fit enough to I have discussed working with cardiac risk in the young to do more on this form of CHD.

I also plan to do a few charitable events and activities when I get the go ahead from my doctor.

The community of people born with Ebsteins is very small though, less than 40,000 people in the world are currently living with it but we are all connected through facebook - or most of us. Some of us are adults recently diagnosed, some are adults that were diagnosed as babies but most are parents whose children are currently living with it.

Are you a proud member of the Zipper Club or does the long scar bother you?

Ofcourse feel free to give more information..

there is also the incredible Cardiac Risk in the Young, that offers free heart health screening to young people aged 14-35 in pop up locations. You can book a space online and have an ECG and ECHO if necessary, which is then reviewed by a doctor on site there and then, and you’re results are given to you before you leave. They’re then passed to your GP to do any relevant referrals and necessary after care x

I am only 8 weeks post op, so some days I find it hard to look at it, and some days I find it empowering.

I was quite a vain little madam before this lol so it’s something I am going to have to learn to love. What upsets me most is when people look at it whilst they are talking to me, when my face is so much prettier lol

Thank you for sharing the info about CRY. I had no idea young people could access screening like that. One DD has ARVC, another DCM and a third is still being screened. I don’t have a question but I’m so pleased you finally got treatment. One of my DDs was having episodes of syncope and our GP totally dismissed her despite the family history. Took four years to finally be referred to the ICC near us. I am sure being female contributed to her being ignored.

Oh my goodness, that’s a lot to be dealing with. I hope you have lots of support, not only for your children but yourself too. How old are they all? X