aortic leaky heart valve: hi, I would... - British Heart Fou... (2024)

Colouredskies•

9 days ago•12 Replies

hi, I would love to hear if anyone has a aortic leaky valve/aortic regurgitation. It doesn’t seem to be as prevalent as other heart conditions. Aortic stenosis is the more common one and more easily dealt with by having an operation.

I was diagnosed with moderate leaky valve at beginning of Covid and was initially told I would need a replacement or repair. But Covid put an end to regular contact with gp and cardiogist and the promised regular tests. Appointments have now improved but I am,not clearly informed of a future operation for it or what the prognosis is if I don’t have it. Also no clear advice on whether to exercise or not, except no weight lifting! It doesn’t help that I always see a different cardiologist every time.

Hope to hear from some of you

Thank you

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Colouredskies

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Jantech8 days ago

Hi there, I have moderate regurgitation and am having annual echoes to monitor the situation.

I am crippled by my anxiety and am finding life extremely difficult.

My cardiologist said I would probably make 80 which has sent me spinning. I am 69. He didn’t mention any hope….

I have found the whole event traumatic and have paid 3 times to receive more information…

Not feeling any comfort at all.

Dr Google gives a little hope.

Lexi728 days ago

Hi Coloured Skies, aortic regurgitation and stenosis are often associated with patients like me with a bicuspid heart valve ( two leaves not three which means it does not close properly and leaks). Am not certain about the position if you just have a leaky valve without a bicuspid as I am not sure what is causing the valve to leak. If the regurgitation is mild to moderate with no symptoms my understanding is that generally doctors just monitor you to see the regurgitation is any worse at regular intervals . It is only if it reaches severe regurgitation are they likely to consider operating although with bicuspid there may be other reasons to operate. I am 63 , asymptomatic and my regurgitation has finally now reached severs after being diagnosed at moderate and monitored since 57. Another family member however has had a moderate leaky valve since childhood and has been monitored every couple of years it is still unchanged at moderate so hopefully you may never need to be operated on. For peace of mind I would ask the doctor if he can give you an idea of the prognosis best wishes Lexi ps none of us are medically qualified on the forum. The above is just what I was told in my case which could be different from yours but hope it helps

Colouredskies in reply to Lexi728 days ago

Hi Lexi72,

Thanks for your information on this, definitely helps to get different perspectives. I hope your op goes well when you have it. When I’ve asked doctors for prognosis they say they can’t say how long moderate, which mine is, will take to go to severe - could be months, 2years, 10 years and that there’s nothing I can do to slow it down. So I’m just left wondering. Only thing to do is try and forget about it. But news of your family members is very encouraging so that will inspire me to stay positive, thank you.

All the best, Skies

Tlyna8 days ago

Oh do I know about leaky aortic valves. Both of my parents had them and ended up in open heart surgery a couple of years apart to replace them. Dad lived over 20 years with his but then stopped taking Lasix (he had fluid retention problems) so ended up with pulmonary edema and CHF. Died of his own stubbornness but not from heart valve failure.

Mom is still alive over 30 years later though she has severe emphysema from smoking like a chimney right up to the morning of her heart surgery.

I also developed it and had a TAVR done this last January and was doing great immediately after the surgery and I do mean immediately after I woke up. I'd had trouble breathing for months before, couldn't walk more than 20 steps without being doubled over unable to catch my breath. I've had no problems with breathing, walking or pretty much anything since then.

You will need the surgery if you want to live, this can and will kill you. I don't want to scare you but malfunctioning heart valves are a very serious matter. My surgeon was actually surprised I wasn't dead already considering how bad off I let myself get but mine had been masked for months because of another health problem and a medication reaction. Check for a good cardiologist and stick with them. I found my cardiologist and cardiac surgeon through my insurance listings and ratings by other patients.

I ended up in the ER which is when I got serious about getting the needed help. I'd be dead now if I hadn't. My cardiologist had the needed tests done very shortly after I saw him for the first time and the surgery scheduled soon after. I did very little activity until after the surgery as I was afraid of doing too much and causing heart failure. I didn't want to risk getting my heart rate up and causing the valve to fail completely.

Be careful and get it done as soon as you can as you have had the problem for a long time now and it never gets better, only worse.

Colouredskies in reply to Tlyna8 days ago

Thanks for your message and cheerful news. I’m glad things have worked out well for you and your family. Unfortunately I haven’t had very good nhs care until last year, so at least feel better that I’m being checked now although waiting lists are still long for appointments and scans. I can’t afford to pay for a private operation but have consulted a private consultant about it once. I was grateful to have your thoughts and suggestions on the situation.

Tlyna in reply to Colouredskies6 days ago

If your symptoms get bad enough get yourself to an emergency room. They may get you into surgery fairly quickly that way. I am in the US and they did try to do that but the surgeon they were going to give me was not in my insurance (the hospital though was)so I had to wait and find someone who was as that surgery is way too expensive for me to pay for.

Classof19888 days ago

Hi, could I ask how old you are and how long you have been aware that your aortic valve was leaking? I had rheumatic fever at age 13, which damaged my aortic valve. I was told initially that I might need the valve replaced later in life but lived a totally normal life (apart from being excused from sport at school, which meant I had to sit in a warm canteen while everyone else froze on a football field 😥😅) for almost 20 years, with annual check ups, ECGs then Echocardiograms when these became available. I was then advised that replacement was a when not an if. The key was to replace the valve while my heart was still working well and not enlarged. My valve was replaced at age 32, and I carried on life normally even performing a safety critical job for 15 years. My valve is now 36 years old and counting... If you feel fit and well in yourself do not worry, annual checks and Echocardiograms will be good to monitor heart health but the heart can cope with a leaking aortic valve for a long time in the right circ*mstances. Do not worry, stress can affect the heart adversely, get yourself regular checks to reassure as you ideally want the valve replaced before you suffer symptoms, but carry on enjoying life. Please feel free to pm me if you have any further questions or concerns.

Colouredskies in reply to Classof19888 days ago

Hi, thanks for your interesting and hopeful message. I was diagnosed in 2019/20 with moderate leaky aortic valve, not long after I was diagnosed with arthritis of the sternum, lung nodules, and had pneumonia at the start of Covid . Because these issues all had pain in the same area (around the chest area) I was seen (actually via phone calls, not seen in person) by the three different consultants who were each telling me the symptoms could relate to any of the problems and took no interest/responsibility for the issues other than their own medical subjects. It’s a long story but finally after several MRI scans and echocardiograms, there was a vague plan for continuing checkups which didn’t happen until last year. Recently the contact and help from each department has been mostly excellent so things are better now. My story of unsatisfactory nhs care is not unusual where I live, surprisingly as it’s an area with excellent hospitals, especially in heart health, so I’m not just making a fuss.

I was 70 in March and prior to these problems have been very healthy and active. Orignally I was told I would need an operation but that particular consultant disappeared and it was never properly picked up by anyone else. Since then I have been told I would be put on waiting list if it gets to severe, or that I could have it done sooner if I wanted to pay £25,000 plus. I read that the longer it’s left, the less the expected life span is after the operation. Anyway, the stress of it all and initial lack of care has made me more ill than I would have been, so although I’d like to find out what I should be doing, I’m just trying to get on as normal and forget about it.

Your situation sounds very good and am pleased to hear it’s gone so well for you.

Beanlover8 days ago

My husband was diagnosed during a pre opp assessment for his hip replacement. He has has had an MRI and Angiogram, seen Surgeon and now on the waiting list for a replacement which is likely to be about 6mthsThey seem to be most concerned about breathlessness, and chest pains, neither of which he has. They describe him as asymptomatic, and he is on medication, but other wise he seems to be just waiting for the op now..

Quesswho7 days ago

Hi I was told I have aortic leaky valve/aortic regurgitation, after my HA, of course I asked what does it mean and what happens next. Apparently when I find breathing difficult especially when laying down they do a repair. But my mum also had the same condition, and lived until 93. ❤

Tlyna in reply to Quesswho6 days ago

Some have it but not too severe most of their lives. I knew I had it but all of a sudden it began to get bad quickly. Couldn't walk more than about 20 feet without doubling over unable to breathe. It got even worse by the time I went to the emergency room where I couldn't lay down at all and didn't make if from my car to the hospital door, they had to come out with a wheel chair and get me as I was leaning over the step railing unable to move or breathe decently. Had the repair done soon after. My mom had hers done over 30 years ago and is still going at 88 almost 89.

aortic leaky heart valve: hi, I would... - British Heart Fou... (2024)

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