I have recently been diagnosed with needing aortic root surgery in the next few years due to a congenital heart defect. I am struggling mentally to get my head around it as I have no symptoms and am generally very fit so it has come as a major shock.
can anyone advise what this surgery will be like for someone fit and active in thier mid 30s and what I should be doing between now and whenever my surgery is scheduled for?
Hi Hatter. Of course you are worried. Such news is really tough to accept. I hope some members with a similar journey will be in touch soon, to share their experience with you.
But i am not sure frim your post if you are actuslly scheduled for surgery, or that you have been told it will happen (when necessary) sometime over ‘the next few years’.
If you arent getting any recignisable symptoms I can understand your puzzlement!
no not yet planned in for surgery just at the point of finding out. I knew I have a BAV since I was younger but the enlarged aorta has come out of the blue and I was very fit and active until I found out and now I feel I am unsure what I can physically do now.
Well, I’m glad they have identified it so they can now keep a regular eye on it. Why not get advice on what you can and cant do,….we will all have opinions, but perhaps your GP would be best to give you authoratative advice on your particular case, and what you should and shouldn't do,
Do let us know how you are?
Dear Hatter87
I too was born with a bicuspid aortic valve. Just means we have two leaflets, or propellers rather than the more common three. I was active until old age slowed me down. Not diagnosed until I was 72 years old.
The probability is that your valve will block up, medical term is stenosed, and you will then have the aortic valve replaced.
You will be noted as having mild stenosis, then moderate stenosis then severe stenosis. You might be given an annual scan to see how the stenosis is progressing. Once you get to moderate then maybe you can start to monitor if you are getting dizzy or breathless. I went for five years in the moderate stage then when it gets severe you should be listed for an operation, but this stage might well take another two years.
By that time, medical science will have progressed. The current situation is a week in a cardiac hospital for major surgery. Success rate is 98%. Then you need about three months rehab.
The only precautions you should take are to keep your weight down, keep doing some exercis. Stop smoking. Keep alcohol to modest levels.
Please don’t panic over the shock diagnosis. You are slightly unusual but nothing worse. Live your life to the best.
By all means log in to this site once in a while but really, live your life.
Best wishes
Sooty
Hi Hatter87
I had a root graft 6 months ago as well as a replacement valve. It's just over a year since I was diagnosed and I felt much like you.
I'd previously been fit and healthy and ran every day.
Thinking back now maybe I normalised the symptoms though until they were impossible to ignore. I "fainted" in the middle of the road mid run after breathing issues, which I thought were a panic attack. GP checked me after and said no problem. About 14 months later the breathing issues had worsened, but only when exercising. At that point my gut instinct told me that something was wrong.
I went to the GP expecting to be told it was asthma and was told to have an ECG. That came back normal and I was told to carry on running. I insisted that I couldn't, so was booked in for a stress test about a month later. Before the test they did an ultrasound which showed up the heart defect.
I'm so relieved that I listened to my body, even though the last year has been pretty traumatic.
I'm still recovering from surgery but people that don't know I've had it are surprised when I tell them, so that probably tells me that I look pretty healthy.
I had to have a Pacemaker too as I went into total heart block after the op.
I walk every day and some days I can now forget that I've had OHS which is pretty amazing. I'm hoping to be able to start running again soon
I was told pre surgery to definitely not run, climb stairs or do anything too active, but I went for a gentle walk each day and that helped with my mental health.
I also found a counsellor and had weekly therapy because I have/had a huge hospital phobia, so much so that I initially said that I couldn't do a hospital stay, so wouldn't be able to go through with the surgery.
I reached out to my GP also for support and she got me Clinical Psych appointments. Those and my amazing CP got me into and through surgery.
Good luck and anything else then please ask
Joanne
thanks Joanne
I am just setting out in this journey and have a lot of the fears you have had. It’s nice to hear someone else who has been through it and out the other side. I apparently have very good heart health apart from the defect so can still exercise just not pushing my heart to it’s limits so trying to recalibrate what I can and can’t do to fit in with that thinking.
I am with a counsellor now for some stress issues from working during covid 19 so I will speak with her as she might be able to help with my anxiety and fear around it all.
Thanks for your support
Rob
Hi Hatter87
I'm 39 with a BAV and about to have my surgery soon. Have you had discussions around when your surgery will be and with what valve? I found out when I was 36 and my symptoms were mild.
Best
Richard
Hi Rich, not nothing yet I have been told I am at the threshold for concern they were sending my scan for further analysis to get a precise measurement so they can then plan the next steps. I feel in no man’s land currently was your diagnosis the same?
Hi Hatter87, pretty much what Heedio said. I carried on as normal for years, I had a checkup echo every 6 months, but I think annual is usually fine unless you feel unusually tired, which I did, which is why I chose to do it every 6 months.
Between my diagnosis and now I've travelled round the world, worked and parented so from my opinion, nothing you need to change until your body says it needs to! My cardiologist said exercise is still important to keep my heart healthy. Maybe not a marathon, but exercise.
Yes, sometimes it is a bit of a waiting game as you go through the process but you're not alone and there is always someone here happy to talk! 👍
There is a lovely Facebook group for people like us
UK Aortic & heart defects Pre surgery & Post Surgery
I'm sure you'd be welcomed to the group where you can ask anything of the members in similar situations.
Hi, I can understand you feeling you're currently in no man's land particularly at your age. I was Congenital with a Biscupid valve and although diagnosed very young, as an adult I was in mid 20s when I was told I would need the valve replaced. We took a view to just get on with life, married, started a family, and then one day, the Cardiologist told us it was time. I was 33 when I had my first AVR.
Unfortunately, deterioration if it happens is such an unknown, mine was slow, but, it gave me time to prepare and consider the options carefully.
Personally, I found that surgery easy and a life changer. Having had further surgeries in my 50s, I'm of the view that having surgery younger is a huge advantage for your body to recover.
In my experience, get on as normal unless you're told otherwise.
Best Regards
thank you this really helps gives me an idea of what it would be like and that the recovery will be better. It’s nice to hear from people who have been in a similar position it’s been hard to get any info on what to expect so this is really appreciated
Hi Hatter87,
Whilst it's a shock, the enlarged aorta is actually a really important and good finding for you. BAV is associated with an increase in formation of aortic aneurysms, and if never found, dissections. The BAV disturbs the blood flow from the valve and it scrubs the wall of the aorta more than it would with a tricuspid. There may also be other reasons for the associations.
Finding it now means you can get it fixed, and fixed as a planned operation. (You don't want an emergency, like mine was).
An enlarged aorta is always asymptomatic.
These operations sound scary beforehand but are actually routine these days, very safe and you will make a good recovery.
When you receive your scans, find out what your aortic diameter is. In times gone past, and without any other need to operate, they used not to intervene until the ascending aorta reached 55 mm. However, that number is coming down as the operations move into the modern era of safety, plus as they need to go in anyway to do the valve, it means they will tend to do the aorta itself earlier, too.
You will get good advice from your doctors, but do ask them as many questions as you want to.
Aortic Stenosis Surgery
Society of Cardiothoracic Surgeons and BAV and Aortic Root Diameter 
Aortic & Mitral valve surgery
Aortic Valve surgery experience?
Anyone here whos had an Aortic Root Enlargement? 
