Hi, I'm 38 years old and I've recently been diagnosed with having a bicuspid aortic valve. I seem to have gone this long without knowing this at all. After have numerous EKG's, bloods, and an echocardiogram I have also learnt I have severe aortic stenosis and severe aortic regurgitation. I'm now awaiting and angiogram and I've been told I will be referred for surgery to have the valve replaced. Until this happens I've been told to keep my exercising to walking only. What is the usual waiting time for this kind of surgery and what other tests and appointments should I expect to attend.
Thanks in advance
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JMFFC
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Welcome to the forum, I am sorry to read that you have this problem when you are so young. The angiogram is the gold standard and will show your cardiologist/surgeon exactly what needs doing. I had Aortic valve replaced and bypass done 4 years ago, open heart surgery sounds awful but the the thoughts are much worse than the reality. As for how long you will have to wait I have no idea, depending where you are in the country and what sort of list they have. Other tests, depending what your surgeon wants, you will have the pre op tests plus when you have open heart surgery they want you to have a dental check, making sure your teeth are sound and no plaque.
You will have a conversation with your surgeon about what sort of valve you will be given, there are a number of options.
As I said welcome to the Hearties family if you have any questions just post and someone will be along to help, it’s a scary time I know but remember to your medical team it’s their day job and do this daily.
Thank you for your reply and the wonderful welcome to the Hearties. I'm not going to lie when I found out about this I was in total shock. I actually ran the London marathon in October and felt absolutely fine and then to be told 4 months later, stop running and keep exercise to a walk was just mind blowing. It's only been the last couple of weeks that I've started to show some of the main symptoms although only slight. For me now it's just the waiting game to be given a surgical team.
As I have time on my hands at the moment I've done alot of reading and am amazed with what they can do these days.
Just a quick word of advice please don’t use Dr Google, out of date information and sometimes completely wrong, only use BHF website or the NHS website.
Some of the info on Dr Google will scare the socks off you. I remember being told I had a heart problem and it was as if the ground had opened up under my feet, and I was 30 years older than you, so you must have thought this can’t be happening.
Believe me you will be good, just listen to what they are telling you.
I do agree with the Dr Google bit. I looked a lot up via Google after I came home, and the statistics quoted frightened me no end, best not to look! Mine was four years ago, but on the AD Facebook page, the guy on there was saying how many years he'd got to and the % survival rate!! This threw me right back - I had put all that to the back of my mind but this jogged it all out again. Best not to look, although loads of people on there reaching 25/30 years post op and still going strong.
I have a tissue valve, so have a shelf life. I look on it as when the time comes for a new one will just see what happens. My surgeon said by the time I need a new valve things will have moved on. I was so very ill before my op every year is a bonus. I try and enjoy every day. 5 weeks after my op my husband had a big stroke and I became his carer, that was 4 years ago, some days are a challenge but we get through. You can’t worry about what the future holds you would miss what today can offer.Best wishes Pauline
I agree with you about Google. When my cardiologist first told me I had Hypertrophic Cardiomyopathy, I was stunned. I had no idea what it meant, so after telling me the basics, he told he to look it up on the BHF site. He also warned me NOT to use Google, and particularly not american sites, or I would scare myself to death.
Hi Pauline,Did they say why you had to have the dental check? Why was this please?
My AD and valve replacement was an emergency OH op so obviously didn't have a dental check prior. However, since the op I must admit to having quite a problem with my teeth, so wondering what the link was.
I was in hospital waiting to be transferred to the heart hospital ( Golden Jubilee) and they said that before OHS they like a dental check, they say there are more germs in the mouth than anywhere else in the body. They like all plaque removed, I had a deep clean by a specialist hygienist ( worse than the op😩) cleaned under gum line. They want to make sure there is no streptococcus. Must admit I am a bit paranoid about flossing now! and seeing the hygienist twice a year though it’s been over a year since I last saw her. Also they want to know you have no lose teeth as you have the tubes down your throat, and they don’t want any falling out! As you were an emergency you weren’t able to get one done, but you were obviously fine.
It’s 4 years since my op, and life is good. Hope your doing well.
I had a bicuspid valve for seventy years without my knowledge. I have a strong heart. Played a huge amount of tennis and was very active. My theory is that the loss of one leaf is not a problem. But, like you, i had stenosis. Maybe stenosis worsens more quickly if we are one leaf short.Your consultant/surgeons will monitor you and will operate when its necessary. As you are recommended to cut down exercise i would guess your op will be sooner rather than later. Thinking 3 to 6 months. Mine was discovered April 2020, just as the cardiac hospitals were closing. I decided to go private, but the NHS situation is now running, so you will be seen in due course.
I couldn't have been more urgent, but it was four weeks.
The operation is amazing. I actually have pleasant memories of it. The only bad part was waiting.
Hi JMFFC. First of all good luck! This is never fun news to get and totally does your head in; the whole waiting in-limbo build up I found was almost worse than the operation itself. But if I can reassure you to say, while it's a big operation - and very scary for us - it's nowadays a very commonplace and successful procedure. If you want any advice on it, what happens, choosing your valve, the recovery process after etc do ask away as that's what we're all here for.
To your question, I guess I can only go on my own experience, which was pre Covid (2018 aged 50) and so things, especially around waits, may now be different. I was diagnosed with aortic stenosis in my teens, went from mild to moderate to severe over many years, picked up an ascending aneurysm on the way, and, as I say, the crunch point then arrived! I'd in that time gone from biannual echos, to annual, to six-monthly interspersed with exercise tests, 24-hour BP monitors and MRIs (contrast and non-contrast). But it had all become a quite standard part of my life so it was still a bit of a shock when my cardiologist turned round and said I'd reached the point of needing surgery!
For me, that was June 2018. I then saw the surgeon in August, where bloods were taken, another echo done (I think, they all blur into one), weight, height, BP etc, consent forms, discussion about valve choices and so on. I think I may have also have had an MRI in July but am not sure now; there was definitely one in this period however (it may have been May ahead of the cardiologist appointment).
After that everything went pretty quiet, which was a bit disconcerting. I had been told to carry on exercising too but not to lift anything 'heavy', though that wasn't defined! I had no further tests etc until admission. I didn't have any symptoms that I felt were limiting me and so did a lot of walking and swimming (although the difference post op was startling and made me realise I actually had had symptoms for many years, just gradually building up).
I was told the pre-op tests would last for 12 weeks, after which they'd have to do them again, so I assumed it would happen and I would hear something in that timeframe. In the event, the op happened mid-Dec, so a few weeks over the 12-week mark, but I guess who was counting?! But it was a frustrating and anxious period. It all went very smoothly thankfully and I was in and out in a week and back home a few days before Christmas, which was a relief and then spent January recuperating before gradually easing back into work from mid-Feb onwards.
I'm now certainly fitter than I was before (if probably still not as fit as I could/should be) and the improvement continues to be astounding so I am very glad I went through it. I am also now being seen (well last time was just a phone chat because of Covid) by my cardiologist once every 18 months, which is an improvement!
As I say, Covid and the knock-on on elective waits could change all this I imagine. But hope you get some clarity soon, and that all everything goes well. Keep us all posted!
Hi Nic. Have just read that and it is very much the same as mine. Diagnosed in my Teens after having 'Scarlet Fever' as a Child which damaged my Aortic and Mitral Valves. Had them changed last September with Mechanical Valves and then a Pacemaker fitted afterwards. Thankfully, now I feel really well. I do have to go back to the Surgeon this Thursday as I am having a bit of trouble with the Sternum Bone. I'm not worried though because the care I have had has been absolutely outstanding. Your Post was great by the way....!! Thanks for posting that 👍 😀 .
Hi. I knew I had a bicuspid valve since the late eighties, but had no symptoms. That changed just before Christmas. I was diagnosed with severe aortic regurgitation.
To cut a long story short, I had an echocardiogram, angiogram and contrast CT scan. I was put on my surgeon's urgent list for aortic valve replacement and a procedure for an enlarged aorta in early February. Still no news of when it will happen.
Best of luck. I'm 66. I really feel sorry for you having this so young, but everything I have read suggests the operation will really sort things out for you.
Hi, I'm 38 with bicuspid aortic valve, I have mild stenosis and regurgitation, they have known with me since I was 1 and I'm reviewed every 6 months now as surgery is on the cards but not until I present with symptoms, I'm sorry but I can't help you with waiting times for surgery etc but wanted to Just say your not alone. Keep us posted on your progress.
I am 40 years old and was born with a dodgy aortic valve. It has been checked every year to six months and I was told in December I now require a replacement valve. I have officially been on the waiting list since the 5th Jan and still have no date. They have said it could be another six months however I was originally told it would be done before the summer.
I am having surgery in Southampton but my consultant is based at the JR in Oxford.
The waiting is hugely frustrating, I would have it done tomorrow if possible!
I had my pre assessments in February and also had to get a letter from my dentist to say my teeth are fit for surgery. I was told that if I had required dental treatment this would delay things until it was sorted. You are relatively young like me so hopefully this isn’t a problem.
I still run 5km four times a week and play golf, I was doing more than this but was told to reduce it down due to risks.
I am fairly a symptomatic which I don’t think is helping when it comes to being a priority.
My advice would be to keep pushing if you want it done sooner, due to Covid there is a big backlog from what I understand.
I will update as and when I get a date and good luck with everything
Hi - you’ve had lots of good advice already on here so I will just add a couple of things. I had severe aortic stenosis and had my valve replaced 2 years ago. I too was leading a virtually normal life up until then - scary to think what can be going on inside as we get on with life eh? On the pre-op checks - these are extensive including lung function and various scans and bloods. What they are doing is trying to highlight anything that might present as a problem during surgery. Open heart surgery is very safe these days and I believe the U.K. is high up the list when it comes to the safest place to have OHS. You will be blown away by the expertise of the hospital staff who look after you - mine were quite outstanding. Good luck and don’t dwell too much on what is to come - the thought of it is is much worse, anybody here will echo that. And I’m sure your surgeon will tell you - you’re young and you will bounce back from this in no time! Take care and keep us posted. Sue 🙏
Not sure what the usual wait time is, but after my scan in late 2020, it was deemed that I need a valve replacement too. They did a follow-up scan within a fee weeks and have surgery currently scheduled for 20 April.
Im told they usually do 7 surgeries a day, it because of COVID, are currently only doing 2. But as they think my case is urgent, I’ve been prioritised.
My guess is that the care you get will be good, if my experience is anything to go by.
I was really surprised that I needed surgery as previously, I’d been doing 2-3 HIT classes a week as well as some cycling, so thought I was in fairly good condition.
I too was told to moderate exercise to ease the strain on my heart. The folk on this forum have been immensely helpful. Feel
Thank you to everyone for your helpful comments. I'm massively overwhelmed with the support on here and also hearing about your experiences helps alot. I figured it would be a waiting game and what with covid thrown into the mix it will slow the process down. This just feels surreal to me at times but I'm slowly getting my head around it. I will defo keep you all posted with my progress.
I too had a bicuspid valve, apparently it's more common than you believe. I was quite fit and it wasn't until I started getting chest pains that I knew something was wrong. I was diagnosed in early 2019 at the age of 49 and was in hospital in Bristol having surgery by October 2019. As others have said, I think it will largely depend on how bad the stenosis is (I too was told not to exercise until after the OP) and how long the waiting list is where you live.
When you are young it's not a very pleasant thing to have land on your lap, but I look at it this way, at least they know what's wrong and it is fixable. Many people have illnesses and other problems and are not so lucky (if you can call us lucky). You will have a mountain of question and there are so many of us on here that have been through it, so don't be afraid to ask. Some of us, myself and Robinangel, to name a couple, did a diary of our events and you can find them via our user profile, well worth a read.
I will leave you with this though and to agree with another poster, sadly the thoughts are worse then the actual event. I am not going to say it's a walk in the park, but the hospitals are geared up for this. After the first couple of days post OP, boredom and lack of sleep are possibly the biggest issues.
Good luck and don't be afraid to post anything at all.
Hi, and welcome to the forum. I was 61 years of age before I was diagnosed with a bicuspid valve and aortic stenosis and an aneurysm. As far as I understand having just the two valves brings on the stenosis earlier. There has already been some excellent advice on here. All I would say is now that you have the diagnosis, keep listening to your body. If something feels wrong or out of sorts do not hesitate to contact your GP, consultants secretary etc, or even attend an A & E department if you start having symptoms that feel severe or out of the ordinary. In my own case I had kept myself very fit all my life and experienced a very severe decline, very quickly. In the space of six months I went from walking the Pennine Way, cycling in the Italian Dolomites, to being out of breath bending over to tie my shoes, or walk up a flight of stairs. I had to really persevere to get my problem addressed, however once it was addressed the service from the NHS was fantastic. December 2019 AVR and feel very lucky and thankful. Prior to the operation you will get a batch of tests. Over a period of time, mine were spread over 2 weeks as I was detained in hospital. It is almost like having a full body MOT. The staff are looking for anything that may cause problems during or after the operation. They even go as far as dental checks as this can impact on the possibility of infection after the operation. So if you can, ensure your dental work is up to date, otherwise this could delay any further procedures. The good thing is now that your bicuspid valve has been identified you will be (or should be) subject to regular tests either at your GP surgery or local hospital. Good luck with your progress.
Hi joe 41 active working Mum of 2 and had my second, now mechanical and hopefully final aortic valve replacement 3 months ago. I’m on track to do a 70.3 Ironman in December the surgery will go well (unsure of wait times but stay healthy) and advise you see an exercise physiologist post op (once cardiology ok it) to give you some goals and focused rehab plan. Happy to chat anytime.
I see you have a lot of positive replies and so is mine. I've pasted the link to my webpage below (I'm not a web expert!) which is a few years out of date now but let me assure you I am fine and love running, before and after surgery and even doing the London Marathon in October this year at now the age of 60! It's the running muscles etc. are the problem not my heart lol!
I never knew I had a leaking Aortic Heart Valve (asymptomatic) until I had a chest infection (not related) that wouldn't clear and my wife pestered me to go to the walk in centre at our local hospital in Feb 2016 (55 at the time and had run a 10k race the week before ). The good old stethoscope came out and the rest is history, ECG, phone calls to the senior hospital in the trust, then referrals and initially a echocardiogram and a meeting with the cardio specialist around March/April time and all the facts were laid out to me!! No more running but I pleaded and said I could do no more than a slow 5k run lol!
Lots more testing done including CT & MRI scans and I finally got my appointment for surgery in middle October 2016 at St. Barts in London, so not a vastly long wait. May I also add I had never spent a night in Hospital before this, just the usual sprains, knocks bumps in A&E.
Please have a look at the link as I could go on! It's daunting, and don't be alarmed with my story, I had to have a pacemaker fitted which was not part of the plan, I was discharged first week of November 2016 and kept asking will I be able to run again, yes they said every time!
I returned to my first post surgery Parkrun at the end of January 2017 and am running sometimes better than my pre surgery days almost 5 years on!
The 7 month surgery wait was a concern but time flew by so please don't get anxious and you'll be in the hands of some truly excellent people. My link below tells the whole story warts and all but don't worry, you will wonder what all the fuss was about especially at such a young age, good luck.
roytruett.co.uk/ (you may have to copy and paste if the link doesn't work)
Hi, it so varies on where you are. I opted to go private to see my heart surgeon at Harefield. He then put me on his waiting list. I waited about 7 weeks and was done last March. From everything I have gleaned from other groups etc I would do the same again. There is something to be said for a specialist unit or hospital.
I had a mechanical St. Judes valve installed in June 2017. At 39yo (diagnosed at 38) being on warfarin sucks and will totally change your life for worse. Ask lots of ?’s, get 100 2nd opinions before you let strangers saw into your chest. Find a valve that allows no Warfarin or a low INR. My surgeon wants mine at 3.5....3.0-3.5. Which means I am in hospital often with bleeds and hematomas (I’m 43 and athletic...not going to act like old man).
And remember it’s a business. I needed a 2nd surgery for a pericardial effusion..10 days after leaving hospital. $60k bill not coveted by insurance as I had to go through ER as I was dying basically. You are a customer...$$$$$$’s. Take your time and find a team that you trust. I trusted the top hospitals, top MDs in Country and my life is worse today then prior to surgery. I feel worse...actually felt good b4 diagnosis as I lived 39 years with BAVD.
Don’t rush to decisions and go full on OCD and remember you only have 1 life...the doctors have more patients to make $ on and improve their skills. So...you are basically meaningless. My surgeon ignored my calls after a year..why? I lost my insurance and had Medicaid. He made $1.8 mil on me from my surgery. Medicaid would pay like $1000 of that bill. Funny how I was important ONLY when I had my good, expensive work insurance that now 4 years later has went up in price so much I can’t afford insurance AND contributing enough to my 403b. And I need insurance for life now as I need to get INR tested Every 2-4 weeks as I have a genetic blood disorder.
Now with Biden I’m afraid. I’m already having problems with approvals and finding doctors since January. Hmmmm
I could be mistaken, but I don't think there is that monetary incentive in the UK that doctors have here in the USA. I had my calcified aortic valve replaced last November and I could see the charges on the Oscar website; eventually they added up to about half a MILLION dollars! So of COURSE now I wonder if I really needed it or if they were just going for that half a million. I did several tests tho that indicated I had a calcified bicuspid valve with moderate to severe stenosis so I decided to trust them and go ahead with the procedure. I guess you're not a Biden fan based on your last sentence, but I sure feel a LOT safer with him in the WH then that psychopath Trump! I had my surgery on November 3rd, actually! (Voted early, of course...)
I think there should be a flag for where you live on posts as I wouldn't want to put any fear on the person who started the post! I'm UK and all my treatment was on our NHS and was fantastic, yes they have budgets to work to but that's life. I have a St. Judes valve which is only licenced for Warfarin and have a INR target of 2-3. There are 'rules' for Warfarin but I still have alcoholic drinks, don't eat too much Vitamim K (dark green veg), don't like grapefruit, cranberries so not an issue. Have to have a high dose of antibiotics before teeth treatment but no drama! Have regular fingerprick tests and my INR doesn't wander much. Still keep my running going now at 60 and have improved as well. I want to try and help people be positive after this type of trauma and life can still be great with only small changes! Don't want to get involved in politics on these posts but your Democrats were only trying to aspire to a fair system needing treatment for all and not a greedy insurance world that is one sided.
Although I have no surgery date yet, I have been advised by others to start looking into what valve to have. Being only 38 I initially thought a mechanical would be a no brainer. Thought I was just the case of popping a pill once a day but after reading into it and hearing people's stories there's clearly alot more to it. Still if I'm being honest I will still probably go down the mechanical route and having warfarin will just have to become part of my lifetime routine. The only thing I need to look into is I'm currently a serving Firefighter (off sick at the moment 😢) and I don't know what impact this will have on my future career.
For what it's worth I had my valve and a length of aorta replaced over 10 years ago and it's not really stopped me doing anything in life apart from scuba diving and contact sports. A couple of years after the op I decided to get serious with my fitness level and got fitter than I had ever been in my life.
Taking warfarin just becomes part of the routine but I would recommend that you self test. Easier and more convenient.
The surgeon didn't know how I was still alive when they tested me prior to the op as the back pressure in my heart was twice what they considered an emergency. His words stay with me to this day. " Mr.... you really should not worry about the operation, I know for you it is a big deal, but its not for me and my team, we do it all day every day". I was able to totally relax after that😬
All the best and I am sure you will be fine and never look back.
Firstly thank you everyone for your replies and support. It's very much appreciated. An update for you all. Things have moved in quite a bit since my original post. In that time I've had numerous bloods done, numerous ECG's, and angiogram and even met my surgeon. We both agreed that a mechanical valve will be best for me. Ive got a CT scan booked for 7th June then hopefully I'll get a date for surgery. Slowly getting my head around it all now and can't wait for it all to be over so I can get my life back to normal.
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