The English Patient

[The English Patient]

Hi Everyone

Been reading lots of posts and found them really helpful so a big thank you for sharing your thoughts and stories. I live in the UK, 45 years of age and was diagnosed 4 years ago with a ?moderately? leaky aortic heart valve?

Over the past four years I have been for annual check ups, heart scans etc and everything has been very stable. My heart hasn?t changed in size, it is bigger than normal but still in range of normal size and the readings (whatever they are) have remained the same. I do get the odd sharp twinge and aches in the general area of the heart and I am generally ready for bed earlier than most. But perhaps the weirdest thing is that when my mind is fully occupied I don?t notice any symptoms, I can walk long distances, do a good mornings work in the garden etc. In fact the more active I am the less I notice anything at all? I wonder how many of the symptoms I experience is simply the result of knowing I have the condition?

Can anyone relate to this?

 

[Curtsmum]

Hi and welcome, yes i can relate. My son is the paitent and at one time every ache and pain he got i used to panic thinking it was related to his heart condition. Over the years i have calmed down. He is relativley healthy and as got a lot better since he as had surgery, if it wasn't for his scars you would never guess there was anything wrongwith him. Welcome to the waiting room and all the best.

 

[Wise]

Welcome to the forums English Patient! I absolutely am right there with you, except for the going to bed early part. I just had my latest cardio check-up and am stable and unchanged. My cardio is more concerned about Aortic Stenosis, of which I have none. Now I'm beginning to look like someone who may beat the odds and never require surgery. Hopefully that is your situation. But, alas, it is better safe than sorry, so the cardio visits continue.

Wise

 

[Cooker]

Welcome to the zoo ... A great place for people with valve issuses ... take off your coat and hat, put on a pot of tea and stay a while

 

[Bonzo Dog]

Hello English Patient, greetings from over the Pennines, like the witty name you've taken.

Looking here on VR.com shows you are preparing for future surgery. That is good. In 5, 10, 15 years or so should it become necessary, you will be well informed as there is a mine of info and experience on here.

You are right to keep fit and active and not get into the wrap yourself in cotton wool semi invalid state of mind. The better your all round fitness levels come surgery, the swifter and easier your post op recovery will be.

Good luck in Marseille tonight.

 

[Phyllis]

Just want to welcome you. I hope you are in the waiting room for a long time, but in the meantime, you can empower yourself with knowledge and that is always a "good thing".

 

[hensylee]

Hi Everyone

Been reading lots of posts and found them really helpful so a big thank you for sharing your thoughts and stories. I live in the UK, 45 years of age and was diagnosed 4 years ago with a ?moderately? leaky aortic heart valve?

Over the past four years I have been for annual check ups, heart scans etc and everything has been very stable. My heart hasn?t changed in size, it is bigger than normal but still in range of normal size and the readings (whatever they are) have remained the same. I do get the odd sharp twinge and aches in the general area of the heart and I am generally ready for bed earlier than most. But perhaps the weirdest thing is that when my mind is fully occupied I don?t notice any symptoms, I can walk long distances, do a good mornings work in the garden etc. In fact the more active I am the less I notice anything at all? I wonder how many of the symptoms I experience is simply the result of knowing I have the condition?

Can anyone relate to this?

I think we are all always aware of our 'conditions' and anything we experience is blamed on it first off. Just part of the whole picture.

You sound good, but keep up with it.

Welcome to VR. blessins...........

 

[skeptic49]

Hi Everyone

Been reading lots of posts and found them really helpful so a big thank you for sharing your thoughts and stories. I live in the UK, 45 years of age and was diagnosed 4 years ago with a ?moderately? leaky aortic heart valve?

...Can anyone relate to this?

Welcome to VR!

Sure, I can relate. I'm older at 59-1/2. I too was diagnosed four years ago, but with "mild" aortic stenosis. I really didn't feel anything much for the first several years, except that I couldn't jog anymore. However, in my case the stenosis has now progressed to moderate. While I still walk daily, I do get winded easily and I tire early in the evening. I believe that these are valve-related symptoms, not merely "in my head." So, I'm watching "the numbers," and waiting.

Post often, and best wishes,

Jim

 

[Jkm7]

Welcome to the forums English Patient! I absolutely am right there with you, except for the going to bed early part. I just had my latest cardio check-up and am stable and unchanged. My cardio is more concerned about Aortic Stenosis, of which I have none. Now I'm beginning to look like someone who may beat the odds and never require surgery. Hopefully that is your situation. But, alas, it is better safe than sorry, so the cardio visits continue.

Wise

Oooh..... If you are at all supertitious, don't risk jinxing yourself. I went from stable to requiring surgery in two months. A series of stable echos and suddenly my valve went bad and went bad fast. I had valve replacement within two months.

I wish you good luck and hope you never require surgery.

 

[The English Patient]

Thanks to everyone for the welcome

Thanks to everyone for the welcome

Waiting rooms are easier if you have people to talk to.

"suddenly my valve went bad and went bad fast. I had valve replacement within two months" who knows if and when, Jkm7 what kind of changes in symptoms did you experience?

 

[Nupur]

Welcome to the waiting room..

Welcome to the waiting room..

Love your name : ) I just joined this group myself. In the waiting room for severe mitral regurgitation. It is weird. Before I was told of this leaky valve, I never made anything of the fact that I had shortness of breath and occasional palpitation. But now, I honestly feel like my condition has indeed worsened in the last two months. I wonder if stress and anxiety plays any role. Anyway, I am sure you will get lots of information here. Welcome!

Nupur

 

[Jan]

Hi

Welcome from across the Mersey,

I was in the waiting room for about 15 years, just having a yearly check up, and to be honest I was doing OK I became breathless but it happened over a period of time that I never really noticed, but after my 2001 Echo it was decided that I would need AVR sooner rather than later.
Had AVR in 2002 and have never looked back,

Thw waiting is the worst but you have found a great place and I am sure all your questions will be answered.

cheers

Jan

 

[bronwyn]

Hello

I was diagnosed with aortic stenosis when I was 3. They (they being cardiologists) said I'd have to have a replacement by the time I was 30. I wasn't allowed to play competitive sports, to dance, and my poor mum worried about me all the time.

I went on to become a champion party girl - I could dance for days, on minimal substenance of any healthful kind.

But I would get pains and twinges.
They would say it was nothing - that if there was a problem, I would know. It's the shortness of breath, the heavy feeling, the total exhaustion.

I continued quite, quite well until I was 37 and pregnant, then my body couldn't manage, and after the birth I had a replacement.
But I truly believe, for me, the twangs and things were in my mind, and like you, didn't happen if I was thinking of other things, for when it went bad, I truly knew it.
Good luck, and stay relaxed.
Bronwyn

 

[Dawn-Marie]

Hi ~ I just wanted to welcome you (sorry i'm late but i was having computer problems and other issues and i'm just posting again). I hope you do not need surgery for a long time. Like everyone else said, stay as fit as possible...it helps. It could be that knowing about your problem is making you think that every little twinge or heartbeat skip is because of your problem...that's normal. I do the same thing myself. Before i went in congestive heart failure in November i'd had sob and chest pain, but had just brushed them off as normal, but now i'm aware of everything that happens and wonder if my heart's getting worse (which it is, or so they tell me).

I wanted to wish you the best of luck and it's nice having you as a member of our VR family. Take care, Dawn-Marie

 

[RobinH]

Hi and welcome to the Forum. I was diagnosed with mild aortic stenosis about 8 years ago. Slowly, it progressed from mild to moderate and, then over the past year (much to my surprise), it became severe. Never during the past eight years have I had any symptoms. As a matter of fact, I am a hard core exerciser and never had a problem. I had my aortic valve replacement 3 months ago and I'm feeling better than ever! Just make sure you have annual echocardiograms to keep an eye of things.

 

[Nancy]

Just wanted to say, I love your name "The English Patient". It was my dear husband, Joe's, favorite movie.

He felt he could relate to the trials and tribulations of the English patient. Joe had a HUGE and difficult medical history.

 

[WayneGM]

Welcome to VR. I can relate as I didn't have any symptoms before my doc told me I needed OHS. I was still as active as I ever was with no problem, IN fact, when I did the physical stress tests, I felt fine and even the Cardio was amazed at how well I did under the circumstances. That said, after I was diagnosed I started to become very aware of every little sensation I thought might be a symptom. I think it was just my imagination as when I was fully occupied with something I never noticed anything. Best wishes and good luck.

 

[Jkm7]

Waiting rooms are easier if you have people to talk to.

"suddenly my valve went bad and went bad fast. I had valve replacement within two months" who knows if and when, Jkm7 what kind of changes in symptoms did you experience?

It wasn't that my symptoms worsened, it was my echo showed far more regurgitation. My cardio was watching my valve closely and I had regularly scheduled echos. When it got worse, it got worse very fast.