Bicuspid Valve and Enlarge Aorta

[Lisa4]

Hi,

I would appreciate some advice on Bicuspid Valve and Enlarged Aorta. I was referred by my GP in June to a Cardiologist as I had been feeling breathless when climbing stairs I would normally climb w/out struggle,general fatigue and chest pains. He noticed a murmur and referred me straight away. I have had all the checks and they have identified a bicuspid valve and enlarged aorta (47mm). I am 50 and have been relatively fit and well with the exception of Viral Meningitis last year.

I have family history on both sides of valve problems, my father and grandmother. My father died in his early 70's of an aneurysm and as you can imagine I'm feeling very anxious. I am awaiting my follow up appointment having had a TEE Transesophageal Echocardiography. The doctor who did the TEE recommended I was referred to a cardiac surgeon as they prefer to do preventative surgery. I'm really keen to get this the valve replaced and aorta repaired /replaced as I'm relatively young with 3 children and want to be there for my family and not take any risks leaving it to be monitored.

Has anyone had experience of this or can reassure me I am on the right track pushing to have the operation.

I have been put on beta blockers to strictly maintain my blood pressure at 120/80.

Look forward to hearing from you

L

[skid112 Heart Star]

Hello Lisa, there are a few posts on the forum discussing this, healthunlocked.com/bhf/post... and healthunlocked.com/bhf/post....

Also you could ring the BHF helpline for advice 0300 330 3311. Some other members will be along with advice as well

Take care

[Lisa4 in reply to skid112]

Thank you for your swift reply and advice

L

[skid112 Heart Star]

Hi Lisa, there is more information on the BHF website, here bhf.org.uk/heart-health/con... and here bhf.org.uk/community/your-s...

[Hidden]

Hi Lisa - sorry that you're feeling so anxious, which is perfectly understandable when you're waiting to have surgery. In most cases, preventative surgery is usually the best option for people. Over time, the condition of your heart can only really worsen as the valve isn't doing its job properly - you can end up with severe heart failure as well as an enlarged aorta, and at this stage open heart surgery might be deemed too risky.

It sounds like you've made your decision already, and if your doctor is happy with this too then I hope this reassures you that you've made the right decision that suits you.

Take care,

Chris

[Lisa4 in reply to Hidden]

Hi Chris

Thanks for the reassuring words, you've really helped. It put my mind at rest I'm following the right path

Take care

Lisa

[Fredders]

Hi Lisa I had my aortic valve replaced and my aorta wrapped, as it was enlarged, when I was 52. I didn't really have any symptoms apart from breathlessness but I had been monitored since I was 16 so my cardiologist decided it was time to do the op whilst it wasn't an emergency and I was reasonably fit and therefore recovery should be relatively quick. I am sure you are doing the right thing and once they have done the tests they will be able to reassure you and decide whether it is time to do the op.

[Lisa4 in reply to Fredders]

Thank you for letting me know your experience. It's reassuring to hear everything went well for you. Thank you

[Fredders in reply to Lisa4]

If you do have to have the op, there are a lot of us on here who have been there and can help with any questions you have about the op and recovery. Take care.

[loubylou08]

Hi Lisa4, my hubby (45) was diagnosed with bicuspid valve in June after keep feeling light headed & murmur picked up. After cardiac referral he was told straight away he needed to have av replacement & put on medication like yourself. He goes in this Thurs to have mechanical valve fitted. We were informed if you start showing symptoms this is the only option. This site is fab for info & great people with lots of advice. Hope all goes well for you xx

[JJL15]

Push for the surgery! I had it 5 years ago at 28 and it has given me a new lease of life since had a baby and another one on the way! It really isn't as bad as you think! Mind over matter it's a routine operation these days. My sister had hers done 6months after me! It will only make you feel better good luck

[Hidden in reply to JJL15]

I have aortic valve replacement with On-X prosthetic mechanic valve 6 months ago. I'm 29yrs. I m on 4mg Acitrom (equivalent to 8mg coumadin) and 150 mg aspirin a day.

What u will suggest for me regarding INR Range, Daily walking miles, blood test frequency , heart echo frequency ,daily routine.

Please help me. I will be very thankful to u all.

[Lisa4]

Hi Everyone

Thank you for your responses and support. Had my follow up appoint with my original cardiologists 2 weeks ago. I was given completely conflicting information from the consultant who carried out the TEE Transesophageal echocardiogram who recommended I have the procedure to replace the valve and repair the aortic root.

I had quite a heated discussion with my original consultant (he didn't complete the TEE as he doesn't specialise in this area) I asked why I'd been given conflicting advice. He became very defensive and said he hates it when other consultants talk to his patients. He thinks I should not have an operation and wait as my bicuspid valve is coping. I stood my ground and asked to be referred to the Cardiac surgeon as recommended by the other consultant and scanned in Jan 2018 to see if the dilated aortic arch has grown. As you can imagine I'm so confused and unsure what's the best way forward. Meanwhile I am still tired breathless and suffering from upper back/sternum pains I've been told the pains are musculoskeletal and nothing to do with the bicuspid valve and enlarged aorta but as they are in the same area they feel very alarming.

Please can you advise or share your experiences on conflicting consultants. One says have the operation the other says not.

L x

[Lisa4]

Just seen my Cardiac Surgeon he was brilliant gave me loads of guidance and ordered another CT Scan. Just got back from the scan the Dilated aorta has grown 2.5mm in 3 months. The surgeon confirmed if it had grown by at least 2mm I would be offered the procedure to replace my bicuspid valve and replace the damaged aorta. I'm so thankful I stood my ground with my consultant had I taken his advice I would have not been rescanned for another 12 months. I hate to think what might have happened.

[skid112 Heart Star in reply to Lisa4]

Well done you, shows the value of asking questions

[Maydayuk]

I am in the same position awaiting a valve replacement and the top of my aorta needs replacing. I had the t echo two weeks ago. My valves at moderate to severe but I had been really unwell. They are going to wait till it's severe before operating. I am 59 they told me I am relatively young to have open heart surgery. I had all my meds changed to get me stable enough to go home. I am back on wait and watch. Take care.

[Maydayuk in reply to Maydayuk]

I've just read your second message, I feel the same confused being told all different things by three different cardiologists. I'm so glad you stood your ground. My next echo is in 12 months.