Only found out I had a hole in my heart 6 weeks ago big scare for me I need to have open heart surgery and I’m so scared about it as I’m very healthy person and need to know anyone who had it before? I’m 23 years of age and this is so new to me!
ASD at 23: Only found out I had a hole... - British Heart Fou...
ASD at 23
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Kaka-23
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I had open heart surgery, it was a bypass rather than a hole in the heart operation, but I understand that the risk factors are broadly similar for most open heart surgery procedure.
The hospital will need your written consent before performing the operation, and your consent has to be "informed", so they will tell you that the risk of something going wrong during the operation is about 2%.
However, that's the average risk for everyone, where as you want to know the specific risk for Kaka-23! Unfortunately no one can tell you that, but a bit of common sense says your individual risk will be far, far lower than 2%.
Firstly the average age for open heart surgery is late 60's, and as surgery risk is very age dependant it means the 2% figure will be grossly overstated for you.
Secondly many candidates for open heart surgery aren't just older, they're also far less fit and healthy than you. Many will be obese or have co-morbidities like diabetes or a history of strokes or heart attacks.
And thirdly the 2% figure is itself based on historical data where as surgical procedures get more polished and practised with every passing year.
I calculated that my personal risk factor during open heart surgery would be about 0.5%, and I'd guess that you're significantly lower still. No one wants to be blasé about a serious operation, but I honestly believe that many people on this forum would be more at risk having a wisdom tooth extracted than you will be during this operation!
Do let us know how you get on.
Hello thankyou so much for getting the time to reply to me as it’s give me more information and I know I’m in good hands just can’t think negatively either 🙈
MichaelJHHeart Star
Hello and welcome to the forum! The son of one of my father's friends had a hole in the heart repaired when he was eleven and that was in the sixties not a decade after the first open heart procedure. He went on to become a successful builder. As said youth is on your side and their has been massive strides in anesthesia, infection control, medication, etc. since then. As you are starting from a position of health your recovery will be faster than average so you will have to be careful not to overdo it.
Hi Kaka-23 these guys here are great and give good advice. I know a young Chef and he got a hole in his heart. I shall follow your progress closely...
Be encouraged okay. You are not on your own!!! I had a heart attack out of the blue end of February and recovering from that. We all have come through our troubles by the grace of God. Praying for you!!!
My wife had multiple holes fixed in the septal wall of her heart between the two upper chambers. Not sure what yours is? She is fine. Had minimally invasive surgery from the right hand side. Deflated lung and stopped heart for two hours.
Hi Kaka-23,
I too have been diagnosed in November 18 with a hole in the heart and am still waiting to see if the NHS will fund the closure. You are lucky if they have confirmed they will fund the procedure. It was a massive shock for me when I found out as I have been diving for 36 years and have been extremely lucky not to have had a fatal incident. They found out when I had a spinal bend after a dive, again luck was on my side as I managed to get immediate help to prevent paralysis/death. I am 61 and fairly fit, I still run 3 times a week (bit faster than a tortoise!), no longer allowed to dive until I have the closure.
Has anyone discussed the possible alternative non-surgical procedure whereby they go into the heart via a vein in the groin? There is lots of information out there on this procedure and it has vastly improved over the years. It is a much safer alternative and recovery times are vastly reduced.
If I can help with links to the alternative procedure let me know. As youth is not on my side I am chasing to get the procedure completed asap as I have more life to live and adventures to have.
We are here with you and wishing you the very best. Keep us up-to-date.
Midgeymoo17 in reply to
By what you have said your hole is a different type. There is a difference between PFO and ASD. The PFO funding is normally one that is difficult to obtain as there is no conclusive of its benefit. closure of ASD is normally funded without question. PFO’s can normally be closed by the groin method- ASD’s normally can not. - Sorry I may have misinterpreted your post but there is substantial difference between the two.
I have ASD and it will be open heart
in reply to Midgeymoo17
In my haste to re-assure someone, I missed the ASD and only picked up on the hole in heart. I don't usually comment, probably for that very reason of making a mistake.
Kaka-23 in reply to
Ah sure don’t worry everyone makes mistakes
What is the difference between pfo and asd please......
They are very similar. Both are holes between the upper two chambers of the heart. The characteristics that normally separate them:
1) ASD's are congenital (present at birth) deformity. PFO's in themselves are not a congenital deformity. Everyone is born with an open PFO. Up to the age of 1 it would be a clinically normal finding to have an open PFO hole.It would be abnormal to have an ASD.
2) ASD's are normally substantially bigger holes than PFO's.
3) Having an ASD has been shown to increase risk of Stroke, Atrial Fibrillation and Atrial Dysfunction. Their is no clear evidence to support this for PFO's. Their is a clear link, that in young people who have experienced an unexplained stroke, that they are more likely to have a PFO than a healthy person of the same age in the community; but the reverse has not been shown to be true. It has not been shown that having a PFO substantially raises the risk of a stroke. {I believe this is to do with size}.
4)On a bureaucratic note, as ASD are classified as a congenital deformity their funding comes under the remit of commissioning of specialist services. Funding for their closure is protected. PFO's are not covered by this.
5) Again as a result of size, ASD's normally show measurable blood flow disturbance on Echocardiogram. PFO's do not.
NOTEs:
1) Despite NHS England having an official policy of not funding PFO closure, the policy document lays out a number of specialist units that can apply to NHS England on behalf of an individual patient, who has experienced clinical symptoms such as a stroke or TIA, to fund a PFO closure. So it is available, but as the person who started this sub-thread has found out: Its a long process.
As I once heard a medic say, its a two edge sword. Yes we should not use Tax Payers money for non-evidence based medicine- which is what PFO closure is at the moment. However to get the data you have to do the procedure.
2)The classification of PFO's as not a congenital deformity is a UK thing. If you google it and come across a US website, the website may suggest a PFO is a congenital deformity. By definition, this is not correct. However, it is normally Adult Congenital Cardiologists/ Paediatric Cardiologists that have the training to do minimally invasive device closure- the method used to close PFO's. Normal cardiologists do not. Therefore, even in the UK, the National Institue of clinical excellence has largely chosen hospitals with a recognised congenital heart programme to be the ones who can apply directly to NHS England for funding to do a PFO closure. This is where the confusion comes in.
I hope that answer was clear (ish). They are not physically that different but the clinical complications for each are very different.
Thank you for this explanation😊
If my answer above is unclear the start of this page explains the difference:
Kaka-23 in reply to
hello I have to have open heart surgery as it is too dangerous for key hole and they have explained that and said it would be okay to do it so nothing I can do now but just wait and see as I am very nervous only 23 and am very young to be going through this
in reply to Kaka-23
Some would say you are quite old for this procedure 😆. It is more often done on tiny babies and young children who do very well. Try not to worry too much.
Take care
Pat x
Hey, it will be ok. I had open heart surgery for a similar problem (VSD) at 3 months old and then an open heart operation at 20 for a valve replacement. I second the advice to look up the Somerville Foundation- they specialise in supporting people with cardiac birth defects.
Kaka-23 in reply to
No they have discussed the no surgical procedure but too dangerous for that so it will open heart now that I have read some of this comment kind of makes me abit worried I want someone to help me 🤷🏽♀️
Too be honest I just want to know did anyone know of anyone who had it or someone that went through it them selves
ASD is the septal wall defect? I think so and that is what my wife had as I said above. She had a piece of Ox pericardium place over all the holes. Hers was to be via the groin but there were too many holes picked up by echo once in hospital. So it had to be heart surgery.
Yes- A: Atrial S: Septal D: Defect (hole between the upper two chambers).
I’m a bit older than you Kaka but I do understand your shock and fear. I’ve been told I need an Aortic valve replacement and like you I’ve always considered myself healthy so was quite a nasty surprise.
Keep your eye on the daily posts and continue to ask questions - so many people on this site are generous with their time and experience and believe me that really will help.
Sending best wishes to you 🌺
Kaka, the other responses are all good ones. The risk factors for you are very low and you shouldn’t worry excessively. But please know that the operation will be followed by a long recovery period. Not painful but lots of discomfort. Within three days of my open heart surgery for bypass I was off opioids and managed quite well for another few days with over the counter Tylenol. No pain after that. The real, totally full recovery can take up to a year with limited movement, loss of skin sensation, depression, itching and poor sleep, all of which absolutely do improve. But it’s slow. Be sure and join a cardio rehab program. Open heart surgery is a major operation but it’s better than the alternative. Best wishes and don’t stress yourself out!
Hi,
I didn’t have a hole in the heart, but I’ve had open heart surgery in July 2017 when I was 47. I hope I don’t frighten you, but It’s a serious op and your body will be put through the greatest amount of stress than its ever had.
My advice would be do a lot of research on the type of op your going to have. If your ok with this, google it. I did, I watched YouTube videos of the type of surgery I had, watched videos of patient experiences after having open heart surgery. Arm yourself with as much info about your surgery and condition as you can.
You have youth and you say you are a very healthy person, so the risks will be absolute bare minimum. This go’s in your favour greatly.!
Take Care,
Liam.
Hi kaka welcome to the forum 🙂 I have an large ASD and had open heart to close it 2 months ago. Same as you I was fit and healthy and was only discovered a couple of years ago. Any questions I would be more than happy to help
Hello how did they discover yours what symptoms did you get?
Mine was discovered by accident as I had a chest injury round my heart area which they did a chest x-ray on and found a shadow on the right side of the heart making it enlarged. Sent a few months later for an echocardiogram and out of blue received letter telling me I had my hole....total shock. Had the T.O.E camera down throat and was told it would be keyhole. Had keyhole surgery but hole to big for catheter to hold so open heart was only solution which I had on the 12 of march this year 🙂
I didn't have any idea of any problems as I had never been in hospital for anything apart from a broken bone in all my 44 years also ran a lot completed 2 half marathons and a few 10 and 5k runs. Did get out of breath quite easy but thought that was just a sign of myself getting older. All going well now and start my cardiac rehab at the gym on Thursday 👍
What about yourself? How are you feeling? I won't lie I spent almost 2 years worried sick bit looking back I didn't need too
I’m feeling abit tired and worried sometimes medication is strong but getting through it and I will get through it just like to hear from someone who went through the same for bare in mind☺️
Tiredness is normal as your right side of heart is doing more work that the left. As it's congenital defect the sooner it's done the better age wise as closing the hole is prevention rather than cure so you're at a great age to make a easy and full recovery. The surgery itself is hard and physical and mentally draining but when you're through and on the other side you'll wonder why you worried so much 🙂
If you're on Facebook look up the Somerville foundation page it has an open and closed group where every member has and was born like us with a congenital heart defect. They have meetings as well all round the UK and I went to one and found a lot of comfort and support with people who understood what I was going through
That would be great il give that a try thanks so much !
Yeah I will get through it no problem just scared of surgery 🙈
I won't give you any scary stories then!! 🙈🙂 Nine weeks post op mine is still sore up top but healing brilliantly but your given plenty of pain relief in hospital and beyond to see you through. Plenty of people on hear nearer your surgery will get you good tips to make life more comfortable when your back home. If you listen to when the cardiologists and nurses tell you you'll do fine 😊
No scary story’s no point on listening to them 😂
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