Hi I have a congenital heart defect that was detected 2 years ago which mean my right artery is in the wrong place, running between the pumping chambers which sometimes cause angina type symptoms I’m under cardiologist and on waiting list for CABG hopefully by end of feb, there isn’t really any data on living patients with this normally discovered after a cardiac event so it’s a bit of unknown all that I’ve read is scary, like it carries risk of dangerous heart rhythm problems and sudden cardiac death, my cardiologist sort of said how long is a bit of string there is a link but we can’t say how dangerous it is! He said if he was a betting man my risk is probably very small.
But how do you cope with the condition you have? Without it causing panic/anxiety? I feel like every day I’m waiting for something terrible to happen to me. I’m sick of thinking about it any suggestions?
Written by
Char1985
To view profiles and participate in discussions please or .
I have been told I’ll prob need CABG and I’m feeling just like you! My stress level is in overdrive over it all, heart pounding! I will just try to keep busy and try not to sit and google and think about it all.....don’t know if I’ll succeed though🙄 what a way to feel at Christmas eh🙄
It’s an awful feeling, I guess the thing is I should of had the op 2 years ago but lots happened and now the hospital worried me sick and I’m an anxious person so add that all up and well as u say doctor google can be great but when u read about what u have wrong with u and all I see is dangerous this and life threatening that kinda makes me freak out! Have u notices ur more health sensitive like every twice pain aches etc I worry
Oh yes, now I keep asking is my heart racing, am I breathless? Trouble is the mind is a very powerful thing, I too have frightened the s—t out of myself with google....even to the point of worry that they haven’t given me the best meds!!!! Back in the summer I was studying “google gastro”
as I was suddenly diagnosed with Ulcerative colitis and autoimmune disease, now I have had to swop to “google cardiologist “😂😂 didn’t realise I was to have such a varied career! Trouble is with us Google’s we don’t understand it all...question is would you get a painter and decorator to fix a serious problem with your car🤔hope you stay calm enough to enjoy your Christmas x
Couldn’t agree more I feel like I know more about my condition then the bloody cardiologist! I understand from there point of view there isn’t enough data to give a percentage on what likely to go wrong or be a problem it’s kinda an unknown I was doing ok really until that bloody junior doctor calls and freaked me out like u wouldn’t believe I get they are worried as I’m displaying more symptoms then before but what’s anxiety related and whats heart related and it’s difficult when ur a nervous person on the whole! Seriously I need to stop using Dr google. Will beta blockers drop the heart rate to much? My heart seems to drop to 55bpm so now I’m like is it actually beating 🤷♀️
I’m on bisoprolol and my resting HR is anything between 55-60 resting. After angioplsty in recovery it kept dropping to 38/39 but the nurses weren’t concerned. If it’s 55 that means it’s ticking nicely without your heart working overly hard😊
Mine is complicated I was on 80mg of propranolol and that was droppingMy heart rate to 50 sometimes lower which the the GP stopped but now I don’t know what I should be doing as I get
Daily episodes of tachycardia like 120 to 145 bpm which is just as bad cos it’s like my heart is racing out my chest
For me, I've known all my life that I had a congenital heart defect, and lived for 45 years under a cloud of 'knowing', knowing that it was affecting my life, knowing I was 'not allowed' to do things that other children my age could do, knowing I shouldn't have children, knowing that by the time I was in my 40's I would need surgery, but, I did as much as I felt I was able to.I learnt to swim (was always told that swimming especially in a cold pool was a big NO)
I had 2 children by the time I was 22, I had surgery when I was about 46 (tbh, I actually can't remember how old I was, I have work it out) 8years ago now, have had to have a pacemaker fitted since as well, but, I'm still here, I'm still doing the things I enjoy ( when covid rules allow), I occasionally drink too much, I occasionally eat the wrong things, some days I can't be bothered to do anything, some days I don't stop, but, the consistent thing for me (other than my family) are my DOGS, I couldn't do most of the things I do if I didn't have my dogs, they make my life complete, they give me a reason every day, twice a day to go for a walk, and without them I definitely wouldn't do that. They are my lifeline to normality.
There were times during my early life, I hated being me! I hated having to go to London every 6 months to see my cardiologist, I often thought about running away so I wouldn't have to deal with it ( I've never told my family that, except my husband)I hated it all with a passion because it represented everything I ' thought' I couldn't have!
Life is not always what we want it to be, so we have to make what it can be❤️
My husband, children and my dogs are everything to me, they are what make my life the life I now live x
We all deal with things differently, death has never been something I have worried about, I have always worried about life ❤️
That’s rather inspirational I think it’s fantastic u have managed to find things to keep u going and a Reason to live, for me I’ve had this health anxiety for years and yes a have good months and bad etc I only found out 2 years ago I should of had my surgery but due to life events I cancelled then I chickened out! Which I regret now as it would be over in one sense I guess cos there really isn’t much in the way of information or data about my condition other then it’s dangerous/ life threatening with high risk of cardiac arrest ive become more aware on my body I guess my cardiologist wasn’t the best to be honest I mean in the sense of understanding and empathy now I’ve been referred over to papworth for surgery I feel a little better but it’s the whole what if thing foe me and because of covid waiting times are longer then 18 weeks but I’m trying to take in a few days at a time then after new year can chase appointments etc again I may not of known about my condition but I’ve made it this far ❤️
I would suggest trying to find someone knowledgeable to talk to, maybe try ringing one of the bhf nurses.I think it would probably do you good to be able to talk through your fears x
That could potentially help to reduce your anxiety ❤️
Hope you can make the most of Christmas, without worrying too much, be kind to yourself, and take everyday as a gift, to be enjoyed x
Thank you for ur kind works and empathy with understanding, yes I see they have a host of cardiac nurses lines are closed currently re-open Monday I believe so will call as u said they may be able to pass some information on that maybe will help relieve some of the fear and anxiety. I see to feel lightheaded a lot which never happened before but I’ve had the 24hour ecg which was normal so thinking maybe starting new beta blocker to slow my racing heart rate. I’m trying to make the most of the holidays hope u are enjoying ur Christmas
Had mines back in may... but idk im going through hell right now i havent felt like my self in a long time i think its the medication i have tried to leave it but idk if my body is having a hard time leaving it that i have all these crazy symptoms... im heading to cardiologist next week to see whats going on
But heading towards operation was scary the process an hour before surgery had me scared but once i dose off didnt feel anything till i woke up... first day i was too drugged out to know what was goin on but after like 3 days its just minor pain.. nothing anyone cant take!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
want to hear something funny? 
Atrial Fibrillation fear
Terrible letter, good result.!!!
mibi nuclear scan fears
Terrible coughing while waiting for an aortic valve replacement 
