New and looking for advice

[N1kk1B]

Hello everyone.

I'm new and looking for advice and support from others in a similar situation to myself. I'm 45 and only just learned that I have congenital heart disease.

I discovered that I had a thoracic aortic aneurysm in Feb 2018 after a car accident. I've recently been told that I also have a bicuspid valve, aortic stenosis, a heart murmur, as well as high blood pressure (which I've had since my mid 20's and is controlled with medication). My cardiologist has suggested starting me on beta blockers as my heart is beating too fast and working too hard. I'm allergic to them, so they are looking at alternatives meds.

I've really struggled to process my diagnosis and am feeling pretty overwhelmed at present. I feel very isolated and not sure the best ways to get information and support, apart from going to the BHF as all other websites on the internet have put the fear of God into me 😱

Has anyone else had a similar diagnosis and if so, the best way to deal with all the emotions that derive from it?

Thanks in advance x

[Milkfairy Heart Star]

Hello N1kk1B

Welcome to the forum.

I acknowledge it must be bewildering coming to terms with your unexpected diagnosis.

Dr Google's consultanting room is not always the best source of information.

There are a couple of charities who maybe able to provide the support you need.

The Sommerville Foundation being one.

thesf.org.uk/help-advice/

I hope this helps

[N1kk1B in reply to Milkfairy]

I'll take a look. Thank you so much for your response 😊

[Calliope153]

I had the same diagnosis after my heart attack in Dec 2017 plus I also have twisted arteries which when they took me down to the cath lab the second time, for a second stent, meant the consultant walked away and said it was too risky to attempt. First off it's the shock - the aneurysm I have is less than 1mm of needing something to be done and I have a biscuspid. And for me absolutely no indication of anything wrong - yeah right was my initial reaction. The murmur goes with the bicuspid valve by the way. I had passed medicals over the years and no one remarked on it. There is no best way to deal with this news. Many people never find out they have a bicuspid valve and live a long life. I found it to be a very lonely experience and even, nearly two years later, now I don;t feel I have got it "sorted". I am on "watch and wait" with annual check up (which didn;t happen until I kicked off big time - it was 6 months late). My way of dealing with it at the moment is to think "it may never happen so don;t waste time dwelling", and work relentlessly on diet and exercise (both of which I hate doing) to give myself the best chance. If you want to chat at any time private message me and I will do my best to give an honest answer to any questions you may have. Agree with Milkfairy Dr Google is a nightmare of fear inducing things. You will get through this stage and things will get better. I suspect you are at the frozen stage - time is what you need but really take care of yourself. You won;t believe me but it becomes something you deal with and move on. By the way, resist the temptation to slap the next person who tells you "you look so well" and I recommend Carolyn Thomas book "A Woman's Guide to Living with Heart Disease".

[N1kk1B in reply to Calliope153]

Thank you. I have 3 children, my youngest being only 4 years old, and it's terrifying thinking about the future at the minute. Hopefully with the right support in place, I'll feel more positive.

[Linedancer21]

It is scary. It's what pushes us to try to change our life style. I also find many drugs don't suit. So today is day one for me. We can do this. When my Dr said we are running out of ideas here. I was shell shocked. So it's over to me. With his help and guidance

[Qualipop]

IT's a horrid shock to suddenly be told you have hart problems> Ask your GP about specific cardiac counselling and for goodness sake do not google.

[N1kk1B]

Thank you everyone.

[CharlesL]

hi N1kk1B

Try to forget about it and get on with your life as normal. Concern is the worst thing.

Take care

C

[Esselstyn]

I am sorry to hear about your complaint, and I do not have any experience around this, but I would urge you to check out the Doctors below as you want to give your heart the best possible environment in which to thrive. One word of warning, some people improve so quickly with regards to blood pressure that their medication can be dangerous. This diet is really easy to do, potatoes, brown rice, broccoli, no oil, no sugar and no salt.

Dr Esselstyn

Dr Dean Ornish

Dr T Collin Campbell

Dr Barnard

Dr McDougall

Dr Greger

[Alisbabas]

Hi,

I’m in the same boat, three children youngest is 4 and found out last year I have bicuspid valve with enlarged aorta.

I am grateful of the support from here and have now stopped worrying. Just had another year scan and all is well. I don’t want surgery while my child is so young.

Let us know how you get on.

Ali