A bit spooky - Did I always know?

[Numberone1]

At 59 I have been diagnosed with severe aortic stenosis. Its all a bit of a shock. Ive seen a surgeon at Kings and he's putting my case to a multidisciplinary team. I will know in a week or so if surgery will be this part of the year or towards the end.

It would appear I have been born with a weird heart valve. They can't work out if its bicuspid because there's 3 leaflets but only 2 of them open and close.

This is turning into my premonition for some reason.

I don't know why but I have spent most of my life thinking there's something wrong with my heart but with no real reason. A couple of times ive gone to the doctors and its always been diagnosed as anxiety and maybe there is an element of that too. Or diagnosed or self diagnosed as menopause.

Ive always been scared to over do it if you know what I mean. I always think I shouldnt over do anything and assumed it was because my parents have been very cautious about life, even their own.

I have had times of shortness of breath or brief pain, light headedness etc etc, nothing major, tiredness, getting over hot all the time. I got diagnosed with an underactive thyroid and have had that for about 6 years.

I was in a serious car accident 20 years ago and have been left with arthritic pain after breaking hips and pelvis and having head injury. Any anxiety put down to that too.

I developed or was born with a heart murmur but told it was benign.

Ive had 3 children. To be honest, apart from the car accident Ive never had anything serious wrong with me, just a feeling that maybe Im not quite right or that if I do exercise for example, I seem to pay for it a bit afterwards.

I have walked around most of my life scared I might suddenely drop dead or heave a stroke etc etc. It really has controlled my life. But again, Ive put it down to anxiety and stopped myself getting help as such. My Parents are hypochondriacs. I would do all I could not be become like that.

Ive had weird moments. Things I could never really explain, odd moments of light headedness and then be okay, odd feelings that I couldn't explain, I can't even now. After my third daughter, I had alot of palpitation moments, went back to work after 6 months and would get moments where it felt like the air had been taken out of me and would go very strange feeling. I was in a good position work wise, I was earning well and had to stop work at that time, take one on that had less responsibility because I assumed I was doing too much. Could never really explain it.

So in October I went to my GP because I was fed up of feeling like my body was letting me down a bit. There were a few things all at once and to me I needed to seek assurance that the thyroid medication was working okay, that maybe I needed a bit of help with anxiety, that the joint pain couldn't be helped a bit more. That no matter how much I tried, I couldn't lose weight and I was fed up of it. This was my last chance of trying to be normal without worrying about my body all the time. I was fed up with people thinking I ate too much when I really don't and I found that quite hurtful. I have a daughter with type 1 diabetes. Our diet is impeccable if only for her. We have no sweetie drawer or even a cake or biscuit in the house.

My gP said before he did anything on those issues he wanted to run some blood tests first. I was frightened to see that he was testing for myeloid and other blood issues including heart failure. Well, after those tests he sent me for an echocardiogram because one of the tests to do with the heart wasn't perfect and a heart murmur that Id always known about but didn't seem to be on their records.

So now I find myself at Kings this week after being referred by a cardiologist. It would appear Ive been born with a weird valve, bicuspid he thinks, that its a severe situation and I need heart surgery some time soon.

And so now all the things I used to think like....ooh whats that little pain, why do I feel short of breath, why am I so hot all the time, why am I a bit short of breath.....how comes these are all the things that actually can happen because of my heart.

Its almost as if Ive always known.

[KazSumm]

Hi 4 days before my 57th Birthday I was diagnosed with chronic Stenosis I had no idea I had a problem with my heart, a genetic birth defect apparently.

I also for the past 8 yrs have felt something was wrong, feeling tired , low mood, putting on weight and not being able to shift it, falling a sleep at a drop of a hat. Finally 7yrs ago I was diagnosed with under active thyroid . So I had an answer but still didn’t feel healthy and of course the menopause kicked in. I then 3 yrs ago developed heel spurs on both feet the pain is quite bad, I had the left one removed Feb 17 , 3months off work, so when I started to feel puffed out by doing the most simple things ie going up stairs, making the bed, walking the dog I just put it down to being unfit after the operation. To cut a long story short I started to pass out 1st time put it down too dehydration, hot day didn’t drink enough water, 2nd time a bit more serious I was out for a while , that’s when I was told I had the loudest heart murmur they had ever heard, wasn’t allowed home and 2 weeks later had AVR and Aortaplasmy. That was 22wks ago. I’m doing ok healed well, feel tired some days and I’ve had a lot of pain in my feet which was sorted 2wks ago caused by severe lack of vitamin D , noticed the difference after only a few days on the tablets. And I started about 3yrs ago to take my thyroid tablet at night it works much more effectively and after 3mths I went from 100 to 75mg and I didn’t feel tired by the afternoon, my hair and eyebrows got thicker and I began to slowly loose some weight. So it’s been quite a year 2017 and I’m hoping 2018 is the start of being me again.so wishing you all the best , take care Kaz❤️💕💖

[Tab1966]

It's a strange thing! I've just been diagnosed with Coronary Artery Disease and just had 5 stents put in. Since my mid twenties (I'm 51 now) I've thought that it'd be my heart that would get me. Consequently I've always been a non smoker and a non drinker and always watched my weight. The only thing I wasn't so good at was exercising and keeping fit.

All to no avail though as I have found out! Will still keep battling on though...it hasn't got me yet!!

Take care of yourself

[gal4God]

I remember one nite my mum who is an hypercondate (sorry I can’t spell) told me I had anxiety because I got chest pains and short of breath and I was rushed into hospital and they found it was a heart valve. I always known I was born with a heart condition.

[Mary_Janet]

Hi,

I too found out, out of the blue that I had a bucisip aortic valve that I knew nothing about. This time last year if you had told me that I would be having heart surgery I would of just laughed and said don't be ridiculous.

Up until May 2017 , I would of said I was relatively fit , ate a good diet and never smoked. However everything changed. On 12th May I went to see the GP after a two week history of flu like symptoms, night sweats and getting no better. My GP was very thorough and detected a heart murmur and sent me to the hospital as a precaution. Within 24hrs I was diagnosed with endocarditis (a heart lining infection) and had a bicuspid aortic valve that would need to be replaced in a couple of years times .By two days later I was commenced on a long course of iv antibiotics and told I would not be going home until the valve was replaced.

I won't go into all the details as I have written them already, my situation is complex and different to others. We all have are own stories and journeys. With hindsight I realise that I was quite breathless going up hills and just put it down to not being fit.I was getting wary of going up hills because I did not like being breathless and was getting frustrated.

I had my operation on 31st, my recovery was slow and protracted because of the endocarditis but everyone says that I am fitter than I was pre operation. I have a fit bit and also go to the gym , something I never did before. Hopefully this week I will be signed off to return to work. Majority of folk are off for 3months but because of the type of job I do and how ill I was my recovery has been so much longer.

The best advice I can give you is, take someone sensible with you to see the surgeon, to listen to the barrage of information you will be given. Write down any questions/comments before you go. Try not to look up stuff on Google, it will only scare you ! Use this site as we may not be able to answer all your concerns but we all have cardiac histories. Finally trust that your medical and nursing staff are professional and experts in the field especially somewhere like Kings.

With best wishes

Mary

[Rosie1066]

Hi, I was born with a faulty Aortic valve - I had two flaps instead of three. In my case it was picked up at birth as I was what was termed a ‘blue baby’. To cut the story short, I had to live with it and my parents were told I probably would not live beyond fourteen years of age. Well, I did and I am still here today! I had to wait sixty years for my AVR operation as the operation just did not exist when I was young. Thankfully, I did try live as near normal a life as possible, although I was treated like a china doll and not allowed to do things other kids did. As I grew older I began to to do what all my friends were doing and didn’t worry about my condition at all and lived normal life, which I am very glad I did as medical advice had changed over the years and exercise was now good for me as long as I didn’t over do things. It’s been nine years since my AVR operation and I have no regrets.