Bicuspid aortic valve and enlarged as... - British Heart Fou...

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Bicuspid aortic valve and enlarged ascending aorta.

Isabel64 profile image
Isabel64

Hello everyone!!..

I am so pleased, I found this website and be able to share my story with those out there who are having similar problems. I am from Spain although I have happily lived in this country most of my life. However, I don't have around me the family network support I would have otherwise and would love to hear from you in the hope to feel a bit more reassured and lest lonely about this matter which I am finding quite daunting!!"

I have been diagnosed with a bicuspid aortic valve by pure chance at the age of 32 having had two healthy children. I was told I had been born with a bicuspid valve which shocked me to the bone for I had no idea there was anything wrong with me up to that point. I am now 52 and had no major issues so far regarding my valve so far. I cycle regularly, I go to the gym and I feel generally well. However, after last year check up I was told I now have an enlarged ascending aorta of 4.3 which is being currently monitored. Having spoken to lot's of people over the years about valve replacements I was feeling quite positive and resigned myself to the idea of having to have a replacement at some point. However, having my ascending aorta damaged as well is a different matter all together as I haven't met or spoken to anyone suffering this type of ailment. I am particularly interested in hearing your views about this type of surgery and would love to hear from anyone who has been through it. I am having an MRI at the Royal Brompton Hospital in two weeks time and are preparing myself for the possible prospect of having to go through this type of surgery.

Looking forward to hearing from you!!... :-)

Regards,

Isabel

18 Replies

Hi Isabel

I can completely relate to your situation. I was diagnosed with a heart murmur when I was 16 and was told I was probably born with it. I was monitored yearly until I was 52 when I was told it was serious enough that I needed the valve replacing. I also had an enlarged aorta. When they did my op I had a tissue valve and they were able to wrap my aorta to bring it back to the right size. Unfortunately my tissue valve started to fail within a couple of years and six years after my first op I had my second AVR - last November. This time I have had a mechanical valve as in the interim period I had had to have my spleen removed and therefore now have a compromised immune system and further heart ops would carry extra risk.

There are plenty of us on here who have gone through the same op, including the aorta, so feel free to ask any questions and use us as your support network. Hopefully the hospital should be able to give you a good idea of when you’ll need an op after your MRI. I think it’s the waiting that is hard. Once you know what they are going to do you can start picking our brains more 😜.

All the best.

Wendy

Isabel64 profile image
Isabel64 in reply to Fredders

Woww... so pleased to hear you are on the mend!... It certainly gives me hope seeing other people having the surgery and carrying on with their lives as normal. I was terrified when I was told and sounded like a dead sentence!.. I eat incredibly healthy, don't smoke, try to exercise whenever I can and I'm always being told I'd live up to a 100!... Well that was my goal until I heard about my birth defect!.. :-(. I was also told it runs in the family but my father lived up to the ripe of old age of 92. I am the youngest of five and none of my brothers of sister have it as far as they know and since they are all well into their sixties I think they would know by know if they did!.. Thank you for your time Wendy... it helps me enormously reading about other people's stories!..

All the best..

ISabel

Fredders profile image
Fredders in reply to Isabel64

The thought of any surgery is daunting but when it’s on your heart it is even more so. Once you know what is going on it’s a good idea to write down any questions you have as it is easy to forget when you are seeing your surgeon. One thing no will be the choice of valve, tissue or mechanical. Your surgeon should explain the pros and cons of each type.

I work full time as a secretary and was back at work 12 weeks after my surgery.

Easier said than done I know, but try not to worry too much. BHF do some brilliant booklets once you know what is going to happen, I found them really helpful. Download them from their website.

We’ll help you through this 🙂

Wendy

Isabel64 profile image
Isabel64 in reply to Fredders

Thank you Wendy... I'm so please so read life can continue as normal after surgery. I wish you all the best!!.. Keep us posted on your progress :-)

Isabel

Numberone1 profile image
Numberone1 in reply to Fredders

I sometimes feel quite confused about people being monitored with a heart murmur. I have one from birth I think or developed one when I was about 10 due to rheumatic fever. But I was always told it was benign so therefore no follow ups. Of course now I have moderate/severe aortic stenosis and currently being assessed with a potential bicuspid valve. I am so grateful this has been found now. It was discovered at 59. However my Mun has a murmur at 87, born with one, and my daughter at birth and she is now 24. At no point has anybody been scheduled time be checked. I’m not sure if I’d have wanted to know but I must admit I wonder how Mum is still so fit at 87. Although the other day I saw her get quite out of breath and not sure whether I should insist she gets checked. Both my parents are well at 87 and I must admit I feel a bit cheated at the moment. However on the other hand I think maybe this interventional surgery isn’t necessary and why me. Come from a family of very long livers. Am I lucky to have this found or should I just have been happy to keep on without knowing?

Hola Isabel

My name is Kaz and 9 month ago today I had AVR plus Reduction Aortoplasty

I like yourself had no idea I had a problem, apparently a birth defect that gave up 5 days before my 57th Birthday .

I was diagnosed with a really loud heart murmur , criticalAortic Value Stenosis, Dilated ascending Aorta, part of the arch and brachioaephalic artery. So I was kept in hospital as mind was critical , I had Aortic Value replacement and reduction Aortoplasty via median . This all’s sounds very frightening and to a degree it was, but when it came down to the day of the op I was so calm and it wasn’t as fearful as I had imagined. I was very fortunate my recovery was perfect and I was home 5 days after the op. That was 3rd August 17 by the 7th November I was back at work. I’ve had a few minor ailments like chest infection which went quickly and low vitamin D levels which I take high dose supplements . My scar has healed beautifully and is hardly noticeable at the top .if and whenever you need the op there are things you can do before to aid your recovery you sound fit and healthy so you will sail through it.

If ever you you want to know more details of the experience and what to expect just ask. This is a brilliant forum with lovely people and a wealth of knowledge and experience.

Keep us updated and take care Kaz❤️💖💕

Isabel64 profile image
Isabel64 in reply to KazSumm

Thank Kaz for taking the time to reply. Sounds like you've been through a lot! I am pleased to hear you are recovering well. Did you have your ascending aorta mended as well?.... xx

KazSumm profile image
KazSumm in reply to Isabel64

Yes Isabel I had that repaired as well that’s called Aortoplasty.

I´m reading all about it on line. I had never heard of that procedure!... Thanks Kaz...:-)

Hi Isabel. I have a different heart condition to you, but I have been to the Royal Brompton and will be for a forthcoming operation. What I can say is that the staff there are very reassuring and I don't think you could be going to a better hospital.

Isabel64 profile image
Isabel64 in reply to DebbiB28

I have recently changed to the RBH so I've no idea what they are like. Good to hear you are in good hands. I wish you all the best for your forthcoming operation. Keep us posted.. :-)

Isabel

Hi Isabel,

You've come to the right place for help and support! I am awaiting the op within the next couple of weeks for ascending aorta replacement and a mechanical aortic valve (had bicuspid valve diagnosed like you).

At first I was really afraid but this forum lets you see there are loads of people who have had this or similar done. So I'm quite calm now. And talking to my surgeon helped too - you realise it's a major thing in your life but an everyday occurence at the hospital, which they're well used to.

Once you get used to the idea and read all the encouraging and positive stories here, I'm sure you'll feel much better about things.

Sending you best wishes!

Dragon1973 profile image
Dragon1973 in reply to Janemags

Please keep us updated to your journey

I was diagnosed with congenital hole in heart in 2004 at age 66. Apparently I was born with it. Had an Aortic valve replaced with tissue valve. I am now 80 and 14 years on.

When NHS started Mum was told I had a severe heart murmur and I probably wouldn't survive to adulthood. She never told me !!

I have always led a very active life and represented Essex at various sports and athletics.

Still very active, do circuits class at gym twice a week. Keep house with DH. Walk most days. Garden most days. do all shopping and cooking.

Life goes on before and after. Valve leaking a bit now but it is 14 years old.

Good luck and don't worry. Get on with life and ENJOY.

Wo.. what an amazing story and what a great life you have led and continue to lead!. It's great to read everyone's story as I'm sure it is very reassuring for us all. To read about someone who is 80 years old and has been through it all 14 years ago is wonderful and I'm sure it makes us all to feel really positive about the future!... Your poor mum, how painful it must have been for her to raise a child with the prospect of not seeing that child surviving to childhood. I'm sure your mum is watching over you wherever she is! :-)

I wish you all the best with your leaking valve and hope they'll be able to sort it out for you.

Isabel

Hi Isabel,

I too have bicuspid valve and enlarged aorta. I'm 55 now and discovered valve defect when I was 51. Last month I saw a cardiac surgeon who stated that the NHS now recommend surgery if your aorta reaches 5mm - mine was 4.9 6 months ago.

I'm interested to know if you have now received similar guidance (although every one is different.)

I hope you are still well and haven't yet needed surgery?

Steve

Hi. I am in exactly the same situation as you. 2 kids extremely fitness obsessed aortic aneurysm of 4.2 and bicuspid aortic valve. I am petrified of surgery. Can live with the possibility of a valve replacement but the aneurysm is a ticking timebomb. So so scared.

Janemags profile image
Janemags in reply to Dragon1973

Don't worry. Easy for me to say as I've now had the op, and as you'll see from my profile I had the same bicuspid aortic valve as you, plus aneurysm. Got the whole of ascending aorta replaced with graft, and a mechanical valve too. I'm on warfarin for life now, which isn't as bad as it sounds. That was end of May 2018 and by the September I was back at work and in October walked all round Barcelona on holiday with the family! I'm 53 and not superfit to begin with, but I'm certainly back to what I was before. Not everyone recovers at the same rate but I think the fitter you are, the faster the recovery.

I was in hospital for a week when I had the op done, but unfortunately I was admitted again 3 days after discharge as over 1.5 litres of fluid collected around the heart and I got sepsis. It was dealt with very quickly though and I was back out again after another fortnight. That was just pure bad luck though, and unusual.

The op itself is a lot to get your head around but I remember coming around from the anaesthetic thinking, thank God, at least that's behind me now. It's true, you get better every day and don't have it hanging over your head any more! You think recovery will take forever but it doesn't. Do what your body allows without straining. The cardiac rehab classes are great as they help you establish that boundary without overdoing it, or not doing enough.

If you'd like to ask me anything specific, feel free. And don't worry, there is lots of life beyond this surgery. We're off camping and canoeing in a fortnight! Take care, Jane xxx

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