Hi all,
Just joined this group so looking forward to reading all of your posts.
I’m 56 and have a slightly enlarged aorta. More recently I was diagnosed with 3 leaky valves, 2 of which are mild- moderate and one moderate- severe.
I’m really low about all of this and google is not helping me which I need to stop doing…
How you are feeling is totally understandable. It's overwhelming and difficult to process everything. Googling is the worst thing possible, I know, I did it too and ended up having a massive panic attack as a result.We have amazing medical teams and they will look after you.
I would highly recommend joining UK Aortic and Heart Defects Pre and Post surgery Facebook group if you are able to though. It was only when I joined that I stopped googling and getting myself into a state
Joanne
😊
Thank you so much Joanne. I’ve done that 👍🏻
I had a 5.2 cm thoracic ascending aorta found as an incidental finding in sept 2021. Also found congenital bicuspid valve ( leaking mild) that also knew nothing about. I was reimaged every six months. I advocated with my local cardiologist to have it repaired electively and this was done this April past. We thought the valve may need repairing but it’s opening well with no stenosis. You obviously need to keep blood pressure under as much control as possible and follow medical advice
Thank you!
Thank you.
Mine at last scan was 3.6, but more worried at this stage about leaky heart valves.
My blood pressure thankfully has always been fine.
I've had two open heart AVRs done in eighteen years. They're not fun but not as bad as you might think. Stay fit is the best advice I can give you. If you need surgery, you'll recover quicker if you are.
Thank you.
I really need to overhaul my diet but feel a bit hopeless about my diagnosis 😕
Leaky heart valves are pretty common. I doubt you'll need surgery unless you reach the "severe" stage which may not happen. Keep your BP in check as hypertension is not your friend !
More and more valve surgery is being done by TAVR. I'd guess that you're years away from needing replacement.
I went through months and months of anxiety and depression before my surgery. I know how you feel.
My aortic valve leakage was "severe" due to aortic stenosis. I'm 74. Valve surgery saved my life. Is it fun ? Hell no, but it's routine these days.
I wonder how long one of my valves will remain moderate...
Hi and welcome! Yes definitely stay clear of Google 😉😅.Is this a recent diagnosis or something you have had for a while?
I was born with congenital heart and I have bicuspid aortic valve and aortic regurgitation and moderate stenosis so will need a valve replacement at some point in the future. Sorry to hear about the enlarged aorta has your cardiologist said what there plan is? Just want to wish you all the best and keep us updated on how you get on, have you got any appointments coming up or is it an appointment every year?? That's what I have to keep an eye on the progression of the regurgitation and stenosis of my aorta x
I was diagnosed in January 2022. I am only now being referred to a cardiologist and have another Echogram and an appt in January.
Starting to convince myself I am doomed!!
I can see why your worried hope your appointment goes well x
Your echo will provide all the info you'll need to set your direction. Heart surgery is naturally scary but NOT as awful as you imagine. Pain is well managed by hospital staff and recovery is surprisingly fast.
If you need surgery, keep in mind that the alternative is worse. Being handicapped by leaky valves sucks.
As I said, I've had two AVRs. I lift weights. Go on hikes and mountain bike. I'm 74 and don't feel it. Well, my back does but that's another story.
BTW, I had a total knee replacement two months ago. Post operative pain was worse than my AVR surgery ! I'm 95% recovered today.
I worried so much before my first AVR. I was obsessed with fear. I shouldn't have been. Remember that the surgery is routine. You'll be in good hands.
Thank you. How far apart were your two AVRs?
Ten years.
My natural aortic valve was bicuspid and calcified. The first replacement bovine valve lasted ten years. The one currently implanted is eight years old and working fine. I'll have an echo in about a year.
I didn’t know but I had a regurgitating aortic valve, EF was down to 30. Had AVR and I’m now at 63 which is considered to be in the normal range. Even the hospital missed it in my initial diagnosis which resulted in 2 x PCI.
I feel really good now and I’m back doing things I couldn’t even consider before my procedures.
Welcome.
You will find some wonderful support on here.
It’s like a lifeline when you need some advice and just to feel you’re not so alone on this journey.
Hi welcome to the group.
We all google ills and ailments and I can not imagine how someone wouldent want to do it, however remember you will not understand most of it and will likely hone in on the bad outcomes as is natural so really better to see a specialist who can explain your situation and not a worse case scenario.
Hello Blossom-tree, I currently have two leaky valves. When I was first diagnosed over three years ago, I had just one - the mitral valve. Latest echo showed mitral now moderate and tricuspid leaking as well! Plus pulmonary hypertension has developed, which, when you google it, is pretty frightening... I can totally understand that you are gutted. After first getting diagnosed, it really affected my mental health. I was so upset. Then, when I was told of another leak and another complication, I was upset again! Having a heart condition is an emotional rollercoaster. Also, with valves, they don't repair them till they are serious so you have it hanging over you. Someone wrote on here about not ruining today by worrying about tomorrow. I try to remember that. Also, I can still exercise, so dancing round the room makes me feel better as does walking outside. I am fitter than when first diagnosed, having embraced exercise - hard work and not what I thought I would be doing at 57. Saw myself more sitting around with a glass of wine! Anyway, being more active actually makes me feel better as does eating a good diet. It's normal to want to beat your pillow up from time to time. However, everyone says on here how good the surgeons are, when the time comes. All the best on your journey x
Thank you for your reply, It's awful isn't it. I used to love running but told this cannot happen now.
No longer being able to run must be hard for you. I think we all need time to grieve for our loss of health and the seemingly unfairness of it all. I'm honestly scared of reaching the stage of being breathless all the time. I'm frustrated too at not being able to plan too far ahead, i.e. book holidays in advance in case my leaks get worse in the meantime. I therefore try to live more for the day and treat myself. Currently looking at last minute cruises!
Exactly and good for you!
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