Moderate to Severe

[Numberone1]

I e just got my latest diagnosis for moderate to severe aortic stenosis. I was diagnosed mild 3 years ago and tokd I wouldn't need to worry for 20 years. I'm very confused and scared. I haven't even been referred to a cardiologist - Helo. What do I do now.

[Nettyanne]

If your latest echo has shown an increase in the stenosis I would have asked for a referral to a cardiologist to discuss the options.

I am surprised that your GP did not suggest that. Maybe make another appt and ask for a referral.

Best wishes

[Numberone1 in reply to Nettyanne]

I am seeing my GP on Monday now. His message was that it isn't urgent, that so long as I make an appointment over the next few weeks! Im horrified and yet the British Heart Foundation also told me that so long as I see someone in the next couple of weeks. Surely moderate/severe is more important than that? Im trying my best not to panic here.

[laura_dropstitch Heart Star in reply to Numberone1]

Terms like mild/moderate/severe are not always that helpful. You hear the word "severe" and naturally you panic/worry, but it doesn't necessarily mean that you are in any immediate danger. The advice from your doctor and BHF suggests the same. That said, I think it's good that you are seeing your GP a bit sooner, definitely sounds like you would benefit from some clarification. I know it's pointless to tell you not to worry in the meantime, but...do try not to worry. Hope you get the answers you need soon x

[Philippa_BHF]

Hi Numberone1,

It is always frightening to hear those words as Laura says. I know there are a lot of people walking around in a similar situation being left out on a limb once those words have been uttered.

I was wondering if you have any new or troublesome symptoms? If you are feeling more tired, breathless or experience any symptoms such as fainting,or feeling like you are going to faint go to your local A&E to be checked out.

if you want to talk things through with one of the experienced cardiac nurses on the heart helpline ,the number is 0300-330-3311 there is someone here from 9-5 Monday- Friday.

I hope that's helped.

Take care,

Philippa

[Numberone1 in reply to Philippa_BHF]

Thank you for your input Philippa. I don't have any new symptoms but interestingly I can name 3 instances where I felt a bit weir over the last 18 months an assumed was vertigo. One was at New Year so quite a while ago and I'm still here. Similar experience last year. I just got a brief weird feeling that made me feel slightly dizzy and off balance. It was over in a flash. It didn't involve any numbness or tingling or inability to speak or confusion - just off balance and strange head feeling. I intend to mention this to the doctor on Monday.

[Philippa_BHF in reply to Numberone1]

No problem at all. Absolutely right- it may have been nothing to do with your heart,but still mention it.

Take care.

[Numberone1 in reply to Philippa_BHF]

What do you think about the overheating thing? I can't seem to get any solution to that and its not only uncomfortable but embarassing too. I almost feel like not going out because if I get ready my hair is wet and my make up off my face. Is that a heart thing atall? I asked to be tested for Cushings because I know thats a symptom along with inability to lose weight etc.

[Philippa_BHF in reply to Numberone1]

It could be hormone related- it doesn't sound classically' cardiac' but it may be another thing worth mentioning on Monday- I hope your GP can address your issues for you.

[stevejb1810]

Who gave you the diagnosis? Its not normally something a GP would diagnose, at least not without having been given the information by a cardiologist.

My advice is to make a GP appointment and talk to them first. You can insist on a referral to a Cardiologist. If you have the finances, another option might be to have a private consultation with the consultant/cardiologist. I don't know how much it would be but something in the £200 bracket (PLUS any investigative work) based on some recent experience with an orthopedic surgeon.

[Kazcoles64]

Hi i also was diagnosed with mild stenosis 3 years ago and now it is severe i am fortunatly under a cardiologist at Papworth but it doesnt stop me worrying stupid about it. The doctor is suprised how quickly mine progressed because it is unusual to progress so quickly but this also seems to be the case with you. If i was you i would defo ask to be refered to a cardiologist then at least you are in the right care. i get regular scans and tests at Papworth and although i am very anxious i do know im getting the best care. Try not to worry too much and i hope you get refered to the right doctors soon, take care

Caroline x

[P-A-UL in reply to Kazcoles64]

Hi at the tender age of 40 (I am 55 now) I had a well man assessment that showed a heart murmer. I had an echo and was told I had calcium on the aortic valve. I was told to forget about it! I am a Coach driver so had medicals at 45 and 50 each time my GP said don't worry about it forget it!

Early 2015 I suffered with breathlessness had lung X Rays scans inhaler etc. In may I saw my same GP told him I was not well asked him again if it could be the heart valve he told me I was too young!

One month later (My birthday night) maybe one glass too much wine but I woke up not being able to get my breath I wacked the inhaler down me and got through the night.

Went to doctors and said it was them or A&E Doctor could see I was ill and managed to set a ECHO

[P-A-UL in reply to P-A-UL]

Sorry pressed the wrong key! Had Echo which showed I had sever Aortic Steniosis. They took my car and coach licence of me straight away.

September 2015 I had a mechanical AVR everything went well now I have Atrial Fibrillation as my one chamber is damaged due to the strain.

So my advice is Bag your drum request an ECG and more importantantly an Echo and then judgement can be made!

[Kazcoles64]

Hi I'm baffled why you had your driving licence taken away iv not been told it's not safe for me to drive.

[loubylou08 in reply to Kazcoles64]

Hi, when my hubby was diagnosed with severe aortic stenosis he was told straight away that he couldn't drive by the cardiac doctor.

[loubylou08 in reply to loubylou08]

Maybe it depends on the symptoms you have as he was having dizzy spells x

[Kazcoles64]

Really I'm surprised iv not even been asked if i drive and infact even now been given a blue parking badge because i get so much pain and breathlessness, so driving is a bonus for me as I can't walk far.

[JJL15]

Hi, don’t panic I lived with severe biscupid aortic stenosis (asymptotic) from when I was 19-28 when I finally had my valve replaced 5 years ago. (I was born with it) They will keep an eye on you I’m sure. Unfortunately the NHS is so stretched that you may not get seen right away . If you start to feel ill then obviously I’d be straight down a&e but try not to panic 😊