Have been on this site now for over a year and have found it very reassuring to hear from others on a similar health journey. Long story short after a very full and active life at 62 years old I was diagnosed with heart failure.A hospital stay and investigations unearthed a congenital defect, BAV, compounded by a minor leak on one of the cusps.18 months later and thanks to a cocktail of medications and lifestyle changes my EF has increased from 20% to 35% and I feel more like my old self. Still a long way to go I know.I still get breathless after light/moderate exercise and often feel dizzy/lightheaded when moving from sitting to standing position, although it doesn't last more than a few seconds normally.I am always very fatigued come early evening and if allow myself( I try to avoid) can nap at any time throughout the day. I am wary of doing any exercise more strenuous than a lengthy walk which is difficut after being so active previously.Consultant advises following a progressive exercise routine starting slow and building based on common sense activity.
I have been informed that at some point in the future valve replacement surgery will be required although difficult to predict when.I have an upcoming follow-up appt with my Consultant end Jan 2025.
Would love to hear from anyone on a similar journey and hear what sort of issues you have to deal with and if any of you experience the same symptoms as mine.
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BigBen_ten
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My cardiologist told me that lightheadedness when standing that only lasts a few seconds was not a symptom of my valve issues, but rather just postural hypotension which is common enough at our age. In fact, I never showed any symptoms from my valve issues.
My issues are degenerative rather than congenital. (I have the normal number of flaps, but mine get rubbery as they age and don't close right.)
My mitral valve showed up leaking first. I was told I would need surgery at some point, but not until it got worse. They thought that would be 2 to 5 years. I had an echo each year, with the odd MRI and BNP blood test thrown in, for the next 20 years. Earlier this year the echo showed LVH (when the muscle starts to thicken to compensate for the leaks) and I was told it was time.
I was advised OHS was the best route because it would give a better opportunity to repair my mitral valve, and anything that needed to be done to the aortic valve could be done at the same time. In the end, my aortic valve was considerably worse than it appeared and I got a mechanical replacement. That was 12 weeks ago, and at this point I'm mostly back to normal.
Thank you fr your reply.Interesting cmment regarding the dizziness ...definately makes sense.Thats a long time from diagnosis to surgery......20 years.Great to hear that so soon after your surgery your now almost back to normal.Good luck with your continued recovery
I too was bicuspid and needed a new aortic valve. I had annual checks and the key factor was stenosis. It was mild for several years then moderate for one year. Then severe and that’s when I had the op. I kept walking and gardenning. Then, whilst walking I started to fall forwards and the op was then urgent.
The op was fantastic. I was pretty terrified before hand, but as soon as I entered the hospital, the staff were fabulous and reassuring. The op was great….i just slept ! Recovery was three months but then I was truly repaired and well.
You are about 7 years younger so it will be easier for you.
Before the op I had three scans. I think this is common place. But, due to covid, I had the tests in house, which was so much better than having the scans as an out patient.
My op was observed and the observers were ecstatic. Apparently my surgeon has a better than 99% success rate.
I have lovely memories of the golden day when I felt fully recovered.
Cardiac ops are often in a separate hospital or a dedicated ward/operating suite.
Thank you for your reply.Great to hear that your surgery was a success and that you have gone on to make a full recovery.Reassuring to hear people say the op went well and recovery was more or less immediate.The thought of future surgery doesnt really scare me as I have resigned myself to it being a necessary event.No doubt as and when it happens I will be apprehensive.Im not sure if an EF of 35%( currently) is considered mild or moderate but hoping the surgery will be years rather than months.I am currently being monitered annually,next appt Jan 2025.Have recently undertaken MRI and CT scans in peparation for the consultation.
Your situation sounds very similar to mine only difference is I'm 27 x I will need valve replacement surgery at some point aswell ❤️. Your symptoms your having I feel like that aswell what medication are you on? I'm on verapamil 120mg at night. I also have BAV aswell.
Thank you for your reply.You have certainly had a difficult time of things to date.I have been lucky to have not had any noticeable symptoms until a couple of years ago when it seemed to appear suddenly.Breathlessness,fatigue and lack of energy which at first I thought was a return of asthma, turned out to be the start of my current journey.I too suffer from anxiety and have good days and bad.Difficulty in falling asleep due to worry and restlesness has a negative knock on effect.I also suffer with acid reflux/heartburn which can also affect sleep .
My condition appears to be fairly stable for the moment due to a cocktail of meds.Among others I take Carvedilol,Sacubutril/Valsartan,Ibravadine and Dapagliflozin.Probably like me you have resigned yourself to having replacement surgery in order to continue recovery and quality of life.
You sound like a very strong person and I wish you well with your continued recovery and happy life!
Do you have your bed at a slight tilt? I find having the head about 4 inches higher helps a lot with acid reflux. (Any more tilted than that and I tend to migrate down the bed during the night— but I toss and turn a lot.)
My daughter had valve surgery aged 18 due to BAV - Ross procedure. She suffered similar issues with exhaustion and also anxiety. The op went well and for 16 years she's lived a normal life which has included having a child . She isn't on any meds for her heart but still takes anxiety meds. She is monitored annually. She reckons that it was a full year before she was entirely recovered.
Recovery time is very individual. Depends on how much you are expecting your body to do, reaction to drugs, previous levels of fitness etc etc
Thank you for your reply.Great to hear that your daughter is doing well after surgery.Very reassuring to hear.I agree recovery time depends on many factors a major one of which is age,.Best wishes to both of you for the future.
I was in the same situation with a BV and minor regurgitation. Diagnosed in my early 40’s with a murmur but no stenosis. I got to 63 with no issues then a sudden episode of Atrial Fibrillation. After seeing a cardiologist I was put on a yearly echocardiogram list to monitor changes in the valve but told within 7 to 10 years I’d require surgery to replace it . No major symptoms over the next few years , the AF was managed by 2 catheter ablations 24 months apart . Last November I had my last echo which showed the valve had deteriorated and the stenosis was bordering severe. I only felt breathless on real exertion but they decided the surgery should go ahead , my EF was 67% . I had the operation on the 3rd of September and am now recovering well and halfway through cardiac rehabilitation. Papworth signed me off after 8 weeks back to my cardiologist and my next follow up with him is in February. Try not to worry too much , go ahead with the surgery if advised and keep as fit as you can in the meantime . It’s a big thing that’s happening to you individually but to the medics it’s routine. I’m now 70 and feel fine 👍
Thank you for your reply.Apart from your diagnosis at an earlier age our journeys are very similar.Great to hear your recovering well after recent surgery and reassuring to know.My EF earlier this year was 35% which now makes me wonder if surgery will be sooner rather than later.Best wishes for continued recovery.
Thank you , I’m sure if your echo is done regularly and your symptoms worsen you will be considered for surgery. It only took about 3 months from the review of my latest echo to being admitted and I felt fine at the time. They didn’t hang around once I told them I struggled with hills . Best of luck to you 👍
Have just recently had MRI and CT scans and awaiting the results.Have an appt planned with my consultant end Jan2025 as an annual follow up.Guess I will find out then or sooner what the near future holds in store.
Hi BigBen_10 I'm 67 and have lived with BAV since my childhood. As age added its load I had annual echos done and just carried on as normal, although I was advised not to scuba dive any more which was sad. Then a few months after the last one I had a chat with a cardiologist who said it may be time to start considering a valve replacement and he referred me to a surgeon for a chat. Then things then went a bit wild as was told he was going to book me in for surgery in a few weeks time. This came as bit of a shock as I was feeling fine and fit and active but guess I'd just got used to living with it. I had the op in April and yes it wasn't how I'd choose to spend my spring and summer recuperating but I'm now doing all my normal stuff and its all in the past now.. I still get a bit lightheaded but have had everything checked and naturally have bit of a fast heart rate but apart from that I'm fine. I also still have sofa snoozes.! Sometimes when we know about a condition we think symptoms are all to do with that - at least I do - when actually they are just you! It sounds like you've had a much tougher time than me so I'd say If you get the chance of the valve replacement to grab it and insist on regular check ups so they operate at the optimum time. Then you can get back to exercising etc with an easier mind, not fretting if it's the right thing to do or not. I was exercising up to the op (not manic just long walks and moving around a lot) but then I had no real symptoms - despite the surgeon saying he wouldn't have operated if it wasn't necessary.
Thank you so much for your reply.Yes very similar to myself although I was only diagnosed much later in life at 62.The excercise thing is difficult as up to 10 years ago I was regularly playing squash and before that foootball.I agree that its easy to associate lack of energy and fatigue with the condition rather than admit to old age.Great to hear your well after recent surgery and good luck with continued recovery!
It's nearly shocking how similar some of these stories are.
The only problem is that if Yumz's progression is that slow then some of us are going to be logging in here in our 80s and 90s to see how her surgery went....
The really shocking thing for me is that I have lived for 62 years not aware that I have a congenital defect and not showing any noticeable symptoms that I associated with my heart.It's scary to think that as I have often pushed myself to limits during sporting activites ,potentially, a disaster could have happened at any time.I consider myself lucky.Not sure though if given the option I would have chosen to be made aware.Hmm.
I was 49 when my BAV was discovered. I was already severe, so surgery happened quite quickly, 4 months. Of you look at my profile you see I kept a diary of the events for about 2-3 months. Have a look, you might find it interesting.
Thank you for your reply.I have just read your posts from the beginning thro to the end.Wow what an amazingly well written,frank and detailed diary of events.I feel like I have been on the same emotional journey thro the operation!
I must admit that some of your comments are a little scary but thank you for being realistic. Im not sure when in the future my replacement surgery will take place I will know better after my next consultants appt end Jan 2025.Im sure i will be apprehensive to say the least but now have some idea of what to expect.
How are you feeling now and has life returned to normal for you?
That's great to hear. Anxiety is very tough to deal with I agree. Before the onset of my heart failure in 2023 it wasn't really an issue but has progressively taken hold. When things come at you out of the blue and are life-changing it kind of makes you think whats coming next...fear of the unknown is the worst. Talking here with others who have been thro the same definitely is a help.
Hi. I was 57 and collapsed twice, apparently it’s called syncope, luckily each time I came round, and had a blood test which revealed heat failure, had an emergency echo and wasn’t allowed to leave the hospital as my valve was so narrow and the stenosis was so bad. It was due to a biscuip valve, I had had no previous symptoms, so it was all a shock. After 10 days in my local hospital, I was transferred to Papworth and had my AVR and my atora wrapped. I was discharged 5 days later, went to rehab and was back to normal within 3 months. My heart has remodelled its self and my ef fraction is around 50% so your heart can recover after surgery. Didn’t really have time to worry or think about it. I had a tissue valve so hoping for Tavi if I need it replaced again. The surgeon told me if I didn’t have surgery I wouldn’t survive more than 6months. I consider myself very lucky.
Thank you for your reply. That must have been a very worrying time for you.It sounds like you were very lucky to come thro after collapsing twice. Great to hear that you're now recovering well post-surgery.It's very reassuring to hear all the success stories involving valve replacement surgery. Best wishes for the future!
PS...no symptoms before the collapses....any dizzy/lightheaded spells?
No, I had no previous symptoms, didn't even know I had a biscuip value, the only time I had symptoms was after the blood test and waiting for the echo, if I ran or went up stairs I felt I was going to pass out again, it's a most odd feeling, very hard to describe, it's because of lack of oxygen to the brain, when I was in the local hospital, they wouldn't even let me out of bed for the first three days. It's amazing what your heart cann put up with. Wishing you all the best.
Hi I took was told 5 months ago I have bav and it's mildly leaky and it's in ascending position whatever that means I'm taking losartan for blood pressure and will have another echo in 12 months time
Thank you for your reply.Same condition as mine,although have to say im not sure what ascending position means either.Have you had any noticeable symptoms up until now?I am currently on an annual follow up too.Hpe all goes well for you.
Nothing other then just tired alot but that could be other things too I'm a 50 female going through the menopause so I have alot of symptoms for that. Did get an bad ear infection that sent me to hospital because it spread to my face and I nearly went in to heart failure because of it. I worry about this issues with the value and Google alot. Lol which is not a good thing to do tbh
I had no symptoms up until 2 years ago when a bad chest infection and fluid retention in my lungs put me in hospital.The diagnosis was a shock to me at 62yrs (then).Try not to worry and try not to google too much...lol....researching health issues on google usually highlights worst situation scenarios and not real concerns.I have my condition under control at the moment with meds and sensible lifestyle.Good luck for the future Im sure al will work out fine.
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