This is my first time post as I have only joined this morning. After 3-4 weeks of tests I have been diagnosed with a Bicuspid Aortic Valve, which has caused a severely dilated Ascending Aorta. These are all new terms to me and me and my wife are sort of in a bit of shock at the moment. All the info is a little bit overwhelming from the CT/MRA/Echo/ECG/Monitor/etc
Up until 5 weeks ago I was running 5k, 2 times and week and doing the 1-2 HIIT workouts a week. After a few weeks of, the only way i can describe it as, not feeling quiet myself I went to GP, got referred to cardiologist and have now found I have had this since birth but the Ascending Aorta dilation may have to be operated on sooner rather than later due to size of enlargement. Due to go back in 6 months to see how much its enlarged. In terms of symptoms apart from the BP these are pretty small so still pretty active, etc
Been put on BP tablets and also have to take my BP three times a week. From all the reading I am doing clearly this is not the end of the world and hopefully manageable until I require surgery, and then working out post surgery life.
That said its all come as a bit of shock within 4 weeks find out you have a heart condition, its pretty serious and probably going to need something done in the next 1-2 years. I am 49. Hence me and my wife are struggling to process it easily.
Thought I would reach out and see if anyone has any advice on initially processing this type of information, as its the first time I have had serious health issue and also how you get your head around you have to stop the things which kept you active and work out new ways. In addition how you, if you can, put it to the back of your mind as much as possible.
My main focus has been only reading things from reputable sources as I work in tech and know good and bad the internet can be. Trying to look on the positive side about all the great stories of recovery, management, etc
Any advice, tips, etc from people who have been through or are going through similar.
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GlennyA
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Hi had a similar problem in 2004 requiring surgery in early 2005, had a mechanical aortic valve replacement and an aortic repair. Found the whole process ok after all the worrying I had been doing. I went for mechanical valve due to my age of 48 this will mean I won’t have to go through the operation again which second time around would be more difficult than the first. The result of the operation was fantastic it gave me my life back and enabled me to do all the things I wanted to. If you require to know anything else or I can help in anyway please feel free to contact me.
Im also only 47 years old and awaiting a mechanical valve to be fitted to my aorta due to the last two years in pain, i feel the waiting is the worse part and the not knowing , just wanted to ask how you felt after the surgery and how the recovery time scale was
And how long you was in hospital for
Just any news on the whole process would be aprecaited please
thanks for response. Not at that phase yet just had initial diagnosis and trying to process what it all means. Suddenly I feel like I lost the power to speak English or at least understand it. So many new terms. Hope yours gets sorted and you can have your op soon.
Hi at the time I worked for a company that had private health insurance, so went to the Wellington hospital in St Johns Wood London, and had minimal invasive surgery. So the incision in my chest was only two and a half inches long. I am telling you this because I believe due to it my recovery was probably a lot quicker and easier than most. It was certainly was quick I was able to walk up and down the stairs approximately 4 floors within days and haven’t looked back since.
Hi Glenny,It's always a shock when your body "lets you down", especially when you've been an active person. It takes time to process it, and is a combination of dealing with the psychological effects, and also understanding the physical side of things.
Definitely good advice on the blood pressure control. Make sure you get it down to 120/80 or less. Very often doctors can still go by the NICE guidance of not to treat until 140/90 but this has been shown not to be appropriate for aortic disease / aneurysms and you should try and get below that. I was in a similar situation and failed to get my BP under control and things didn't work out too brilliantly.
Good that you're being monitored closely. Was this by echo or by CT/MRI? And can you say what your ascending aortic diameter is?
thanks for the response. Been told it falls into severely. Challenge is right now until we have the next scan we only have one data point. So really we need to work out if it’s been static for a while or what rate it’s enlarging at. If it changes much been told we will start to plan intervention although not like panic mode but start talking to surgeon, etc.
Are you being seen by a specialist aortic centre? The guidelines around diameter/ rate of growth are somewhat old have not really caught up with current knowledge (which says that you should have a full assessment of all your risk factors as well as imaging of the aortic size). The aortic centres have this knowledge.
Not to alarm you, just practical advice, but after my experience of a deferred diagnosis following my dissection, I always also advise people to wear a medical alert bracelet/pendant giving details of your aortic risk. It really helps doctors to diagnose any sudden event, as too often chest pain is only a flag for heart attack. I "forgot" about my enlarged aorta (I was too worried to think straight) consequently it took a couple of days to get a correct diagnosis.
Thanks for this. Yes my cardiologist is a specialist in this area and congenital heart stuff. Hence my comment about not understanding English. I have so many measurements / etc which have been taken I did not know so many parts of the heart existed. Thanks for advice though really appreciate it.
It is a shock isn't it. I am still coming to terms with my diagnosis after 9 months. The one piece of advice is trust the medical profession. The big positive is you will be looked after. If it is congenital hopefully you will be seen by the congenital heart team and will have regular checks like I have had. I do have talking therapy with nhs well being. It's good as it puts things into perspective. Not in a nasty way just to make you think that you are now safe and being checked. I will admit it is not easy. But you are right try not Google stuff. Take the medication. And do some light exercise. I have started light cardiac re hab exercises down gym. I was never a good long distance runner due to my issue which I assumed that was me being normal. Any way it is going to be a journey but don't be hard on yourself. From my therapist we have said to pace and plan still do the things you want but just use common sense. The one thing that must be done is to control blood pressure. It is quite a complexed system the heart but there is more to blood pressure, than we think. If you do need help then the British heart foundation nurses are good to talk to and the Somerville heart foundation. There are many more. I have payed private for hypnotherapy. Which helped. But having suffered anxiety all my life this is just the icing on the cake. But try to do things to make you feel that you are helping yourself. Loose a bit of weight. Exercise, fast walking best. Eat in moderation and possible go to heart healthy diet. Reduce stress. Not easy but again just plan more to make life easier. I hope you get sorted. Remember you and your partner are a team so work as a team and discuss and plan things together.
Your bicuspid valve simply means your aortic valve has two leafs, (propellers) whereas many people have three leafs (propellers).
I was bicuspid and I didn’t know until age 72. I have had a replacement valve. Unlike most medical issues, my new valve works really well.
Maybe us bicuspidps can suffer worse eroding , often stenosis, but in general terms bicuspid isn’t the worst thing.
Stenosis simply means blockage.
Please continue to only refer to NHS or BHF sites. You really do not need the added problems that other sites might impose.
Just to put things in context, I was very active as a younger man. Did the London to Brighton walk, cycled around the country and played about a million sets of tennis.
Cardiology wards are fabulous, waiting is by far the worst bit.
Hi Glenn, I have this, was diagnosed 4 years ago and have been having check-ups and scans since (apart from during Covid).
It is a shock when you are first told. Don't look online for answers. I made that mistake and got myself in a total tizwaz. Instead, chat to people on here or go onto the Fb page, UK AORTIC & HEART DEFECTS PRE SURGERY ♡ POST SURGERY (link below).
Everyone on here and Fb have been through the same or similar and has experience of what you are going through. Ask all the questions you want; they will have most of the answers. The support you will get is wonderful. You may be at the start pf your aortic replacement journey. Your shock and the worry about it will lessen, but will start up again when you are told your surgery time is near. That's how it was for me. My op is imminent and chatting on here and on Fb has been invaluable. Also, make sure you write down all Q's and concerns before you have check-ups and consultant appts, and take them with you. I was so phased when mine told me my op was imminent that everything flew out of my head.
Hi GlennyA. I was in the same position last October. Felt like the rug had been pulled from under me when I was told that I had S congenital heart defect which needed OHS.The one thing that I can recommend is a Facebook group. UK Aortic and heart defects pre and post surgery. 99% in the group have been there or are still going through it, the other 1% are partners.
Loads of advice, reassurance and empathy.
I'm now through surgery and recovering and make it my mission to help those who like me last year feel like they are in free fall.
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