Went for yearly blood test today to GP surgery and the nurse left the room and I took a peak at computer screen with my health details on it. Literally, as I read what was on the screen I was shocked...went weak at the knees and had to sit down after reading the words, Congenital Heart Failure!!!!
Apart from my mental and physical response (shock horror) I was and am still unable to process what I found out. Why was I not told this by my GP? Why wasn't I told about precautions I should take by at least one medical professional? What has gone on here? So many questions that I won't get answers to.
I am So very afraid and so uncertain about my future prospects, if any. Really not feeling at all optimistic.
I am aware that I have been diagnosed with AFib, mitral stenosis and severe Left Atrial Dilation which I take bisoprolol, apixibam, and amlodipine for but I always assumed that these conditions were not that serious at all. I haven't even seen a NHS cardiologist yet only a AFib nurse after two emergency admissions to A+E. But seeing the words Congenital Heart Failure terrified me to the point I am numb and dumbfounded.
Has anyone here been told they have congenital heart failure. If so what is the treatment for it be it medication or surgery.
Thank you in advance
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DizzyD
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Maybe don't panic until you have spoken to your GP and found out what it means for you.I have some pretty scary things written on my notes but not all things to immediately panic over.
Ohhh bantam thanks a lot for your advice. On the screen the top diagnosis said congenital heart failure, underneath that there was a list of heart conditions I already knew about which appeared to suggest to me that CHF was a final conclusion someone had reached after taking all my health conditions into account. Mind you I did notice that diabetes was included in the list. According to my last annual blood test, I did not have diabetes but pre-diabetes despite being slim built and having a healthy diet while getting lots of exercise at that time. Over past year exercise gone out the window due to heart problem so I could have developed diabetes but how would GP know this without a blood test.
Oh dear so sorry for ranting on.
Yes I will speak to my GP and ask him for a letter of referral to a private cardiologist for a private consult who will explain to me what the heart diagnosis means for me. It's going to be a very long time before I get to see an NHS cardiologist so at least I will gain some insight from the private cardio doc while I wait, with baited breath and perhaps panic, for NHS appointment.
A few weeks ago I was told I have a splenic artery aneurysm, an incidental finding on a CT for something else, it's rare and fatal if it ruptures, it must have been there a while and seen on previous scans but I wasn't told. I spoke to my GP, who admittedly doesn't know much about it, she said "don't panic" let's find out more about it first. I do believe when we have a multitude of health problems we do learn to take things in our stride, just another hiccup and we will deal with it 😉
I've got one of those splenic artery aneurysms that was picked up on a CT scan incidentally. The consultant I saw said they are often accidental discoveries and if they are below a certain size they are just left alone (another CT scan this year to check it hasn't grown). They are probably very common but it is not known how many people have them because they overwhelmingly cause no problem and are most often picked up while looking for something else.
Spontaneous rupture is rare but I was advised not to take up rugby or contact sports which is unlikely at my age, but running etc was fine. I was told if it bursts that you will know about it and have an overwhelming urge to want to go to A&E at which point you should tell the staff that you have one. Even in the same area the A&E you end up will not necessarily have access to notes from other hospitals.
People do not die in their sleep from one. I understood that the fatality rate appears so high because it is not an obvious place to look for stomach pains so can get missed. Once in A&E the rupture can be dealt with, in the worse case your spleen gets removed and you spend the rest of your life taking even more pills and you have an elevated risk of infection.
I know it's more common than thought, just not picked up. Mine is heavily calcified so I want to know the implications of that, if it can block as a coronary artery does then it needs sorting.I'm not particularly worried but I have had numerous scans and 2 CTs in the last 6 months so I should have been told it was there so had there been any problem I would be aware what it could be. I've had ruptured bits and emergency surgery in the past and certainly don't want to go through it again !!
I had a similar experience after I developed a bad chest infection. My discharge letter said I had severe heart failure. I am now on a cocktail of drugs and have recently had a pacemaker fitted. I am coping OK with good monitoring.
Yes it's a shock, but manageable. Treatment is much improved these days.
Thanks Rufusscamp it's reassuring to know there is treatments available. Sad thing is my heart failure was caused by being over medicated with thyroxine for 30 years which made me hyperthyroid. Hyperthyroidism causes heart failure. It was a endocrinologist who told me this after he looked at my thyroid reading levels going back many years. He also told me being over treated with the thyroxine had damaged my heart. I have found out the full extent of the heart damage now.
Hi that's interesting you mention thyroid issues as I know there connected to heart issues I am abit concerned as only young in early 30s and took levo and then combination with liothyronine for a few years as been on meds since 21! and now self medicating on ndt and TSH been on the lower suppressed side. How do you know you have been over medicated for years what confirmed that and what are your thyroid results that confirmed it? As I want to make sure I am not over medicating as I too have started with slight heart symptoms and waiting to see cardiologist as I had a echocardiogram and it picked something slightly up but when I researched it is connected and can be caused by thyroid imbalances.
Rather than rely on a glimpse at a computer screen, you can request a copy of your records from your GP surgery. You're fully entitled to your records, you may occasionally be asked for a small admin fee to cover the cost of copying, but for most people there's no charge.
Armed with these documents you can then have amore meaningful discussion with your GP, or you can always speak to one of the friendly and experienced cardiac nurses on the BHF helpline.
I'm sure you'll find the reality of all this to be far less alarming than you fear.
Thanks Chappychap will defo phone GP surgery and request a copy of my medical records concerning everything to do with my heart. Hey what an exciting and challenging mission!!! Well done you for suggesting that.
Dont panic, everyone that has read your post and in this thread is thinking about you and hoping the best. Good luck
Sorry to hear about the way you found out, but things will be fine, at least now you know. Your experience and that of others, including myself, highlight how some GPs deal with their patients.
The irritating thing is the feeling helpless about what to do, to challenge them may backfire, to register with another GP is a lottery!
Ohh Ocset thank you. You are spot on: I feel so helpless...I do want to challenge them so badly...not worried about the backfire. In fact they can throw me off their books if they like. When I first started getting heart symptoms I literally had to challenge them to refer me for some NHS tests. Never did get the tests; I had to go private. Am contemplating selling my house to go private again as I haven't even seen a NHS cardiologist yet and going to have a long wait to see one considering the backlog of patients.
DizzyD, you definitely need to talk to your GP and have him / her explain what is on your record. I am a bit surprised that you have that list of heart conditions and not seen a cardiologist, how were these diagnosed anyway.And finally, did you read that ‘congenital’ correctly? ‘Congenital’ means that you were born with it. Could it have been ‘congestive’, which is a term often used when a heart does not function normally for a number of reasons. I was - to my knowledge - never formally diagnosed with ‘congestive heart failure’ and yet it is on my NHS record as my heart is not completely normal.
So my suggestion is not to panic but insist on a proper explanation of your record by your GP. You ‘own’ your record and you have a right to have it properly explained to you.
Hey Fallot congenital v congestive????? Yes I May well have got it wrong. Thanks for pointing this out.
In response to your question, regarding how my heart conditions were diagnosed:
Became progressively ill 2019 besides other physical symptoms, had scary heart symptoms which GP knew about. GP would only do blood tests which were inconclusive. End of investigations by GP. But I suspected my heart was in trouble. So got a consult with a private cardiologist, told him everything (symptoms I told My GP) and he wrote to my GP advised him to prescribe me bisoprolol, aspirin and suggested he refer me to a NHS cardiologist. It worked. Had one initial consult with NHS cardio who referred me for CT scan and echocardiogram. Then covid struck so I did not get the tests. Went private again and got the tests. Hence diagnosed with stenosis and severe LAD. End of private cardio.
Then AFib attack....diagnosed after emergency admission to a+e. Referred to AFib clinic. Got covid and another AFib flare up and admission to a+e again. Referred to AFib clinic again. AFib nurse has referred me to see another cardiologist bc I told her my heart symptoms are much worse since I caught covid. She did tell me I will have to wait a long time before I actually get an appointment.
After that lot net you are sorry you asked how I got diagnosed?
Thanks a million Fallot...you have inspired me to go on a mission and get MY medical records. The first private cardiologist I saw told me he was going to write a long detailed letter to my GP.....can't wait to see what he wrote.
Hi can I ask what where your heart symptoms as I wonder if I had similar with having thyroid issues too a sibhar to take myself to a n e a couple of times I am only stable at the moment as on adrenal supplements which some how reduce my symptoms but I would be in a n e if I stopped taking them but GP with doing anything and my cardio app isn't till Nov 21
As far as I know congenitive heart failure is just another term for congenital heart disease I.e. you have a heart defect present from birth but please do check with your GP, good luck.
Hello DizzyD,I had HA and stent fitted last May. Until recent echo I didn't know I had HF due to MVR. I wasn't told at the time about this and when I questioned if this was recent or been there since initial event, was told been there since HA.
It's took me a bit of getting used to as I feel I was doing OK, but I'm slowly coming round to this condition. I am exercising and yesterday had a session with cardio rehab team determining heart rates etc. They gave great advice.
Maybe you could be referred to HF nurse and cardio rehab team for support.
Hey thanks pjw 17 great you are on the mend. It's stressing me out cos I so want to exercise. Missing it so much but am so aware that I am prone to push myself too far. Walked 18,000 steps a few days ago. Don't. think I would qualify for rehad. Unlike you, I have not had a heart attack and stent fitted. Keep at lovely.
Hi Dizzy. What a horrible way to find out. The term Heart failure is scary but it doesn’t mean you’re going to keel over any minute, it just means your heart is inefficient. The meds you are on are appropriate to treat your HF and with this cocktail things might improve. There is a charity called Pumping Marvellous which has a website that is specifically for patients with heart failure. They have a number of leaflets about managing your condition pumpingmarvellous.org/heart.... Try not to worry. Do talk to your GP and ask for a referral or at least if you can have a discussion with a heart failure nurse at your nearest hospital to get some reassurance. Good Luck.
I recently had a call from my GP saying there was a note on my records that I had had heart failure, asking for some blood tests to be done so that he could prove that I hadn't. So things are not always what they seem. Is it possible that what you saw was the result of your nurse looking up congenital heart failure to see if that matched your conditions? Not your record at all, but just professionalism checking up. Don't always believe what you read on a computer screen, particularly if it's someone else's.
Hi, I'd get in touch with your GP and find out what the situation actually is and what they plan to do for you.
This could be a generic template on the screen that lists a whole selection of things, very black and white, but that doesn't mean you tick all those boxes.
Go back to your GP and ask for a chat, say what you saw and take it from there.
Please don't make yourself ill by worrying. If there had been something, I'd like to think they would have told you before now.
Congenital Heart Defect or Congestive Heart Failure yes.
Congenital Heart Failure is not really a used medical term. Or not in your case anyway.
Think about it;
congenital means present from birth. You have acquired HF, you weren't born with it.
And C(congestive)HF could be something applied to a very broad range of symptoms. I mean, it could even be caused by a certain cocktail of drugs which theoretically could improve or disappear if they were stopped.
Hey BC-10 yep it could have been Congestive Heart Failure. Really do agree with the point you made about Bisoprolol. Do know my mild symptoms, or non existent symptoms appear after I take it....tightness in chest, breathing more difficult, legs like lead weights. Think I will ask doc for an alternative beta blocker.
No I did not ask her about what I had read on the screen as I was in a state of shock. Besides she is only a nurse and not a doctor. Furthermore, she could not draw a blood sample from me which was surprising bc I had a blood sample taken the previous day by a friend for a test I was getting done privately with no problem. In the end I got blood sample from off her and told her I would get my friend to do the blood draw.
I am so sorry that you have to find out in this way, that there might be a serious issue with your heart. The first thing I would suggest, is that you make appt and speak about it to your GP to confirm that what you saw on the screen was indeed a heart failure, and ask who has diagnosed it. Then you must demand to be referred to cardiologist, as soon as possible. I am amazed that this has not be done if you already had other existing heart condition.
Do not lie in bed at night worrying aboout it, but try to be more assertive, quitely and firmly in a polite way, and demand that you recieve treatment to which you are entitled. You need to see a specialist cardiologist, as soon as possible, Covid, or not Covid.
Just, because of Covid some GPs don't pay attention to other urgent health issues, and it is difficult to get help, you need to be more pro-active to get the treatment you need.
I have been through it all recently in the last few months including pacemaker op, for my AF which was getting out of control. And I had to fight for everything every step of the way (still do).
Hi Arnika you have inspired me to get pro active. Just phoned GP got a telephone consult for next wednesday...let the challenge commence. It's not right that some of us have to fight to get adequate treatment though.
I cannot tell how glad I am that you have made this first important step, You have made my day, because I know that it was not easy.
Just make sure that you prepare well for this phone consultation as it is easy to forget what we wanted to say, so write down,,point by point, what you want to say to the doctor and the full story of your symptoms .
The fact that you have been twice to AE means that this is not something that can be ignored any longer, because you must be worried, that it might happen again. You need to see a consultant cardiologist for further investigations and treatemnt, as soon as possible.
I will be thinking of you on Wednesday. Let us know how you get on, Good luck DizzyD.
It need not be the end of the world - despite still playing sport I had a heart attack 18 years ago at 54, as a result of which I lost my circumflex artery and had a pulmonary embolism . After initial catastrophic shock I led a pretty normal life for 11 years before getting A-Fib 7 years ago. After getting different medication and a new high-tech CRT(D) fitted a year ago things are again not too bad - being able to walk at least a couple of miles on the flat or a bit shorter up small hills not to mention a few holes of golf. Do feel knackered easily but not too many other symptoms
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