Bicuspid aortic valve

[Parkhome]

Hi, had 2 hip operations cancelled due to heart rate of 39, spent 2 nights in hospital, they said I'd got ventricular bigeminy. Have had eco. 24hr holter monitor, still waiting for results on 24hr holter monitor.

I got a letter in the post on Friday with results of

My Eco. I'm totally devastated it says I have an abnormal valve which is a bit narrowed (Biscuspid aortic valve mild aortic stenosis,

They have arranged a cardiac catheterisation & ct aorta. Probley a 2mnth wait if I'm lucky.

They've said about dialation. & depending on results of catheterisation they start to think about whether a operation for the valve & aorta is required.

I have got breathlessness at the moment, it's completely knocked me for 6

cant believe what's happening, I'm 67 yrs old. Any one else been in this position.

[Hannah13]

I had an aortic valve replaced 9 years agoMy only symptoms were discomfort in chest when walking and heart murmur (which I wasn't aware of) ,

I was 69 at the time. In and of hospital in 5.. days . No problems .No pain

[Parkhome in reply to Hannah13]

thank you for your reply. Did you have a metal or synthetic heart valve as I know you have to take warfrin for the rest of you life, & have been informed the synthetic pigs heart valve only lasted about 10yrs , how long did it take to recover as its quite an invasive operation, & how are you still feeling, any after affects.

[Ageingfast]

dear Parkhome

I was bicuspid for 70 years and didn’t know. But when stenosis got its grip, then it did matter and I had the op for aortic valve replacement.

Bicuspid means that you have two propellor blades whereas the majority have three.

At first, when I had mild stenosis, nothing bad was going on. Then it became moderate, then severe. At that stage the valve needs replacing. Urgently needs replacing before it gets to critical.

At the final stages I would stumble forward.

Replacement valves are either metal or synthetic. Metal lasts many years synthetic wears out more quickly.

I went synthetic and have been trouble free for more than 4years. It gave me my life back. Brilliant.

I had OHS (open heart surgery) but there is TAVi as an alternative. TAVi involves placing the new valve through your veins.

I promise that the worst part of this is right now, the waiting.

The cardiac teams are just stunning. The nursing staff are wonderful. OHS is a big op but very very safe. Recovery is long, But I just felt better and better every couple of days. Certainly was lovely to breath freely.

Regret to say I haven’t got a clue about medical terminology. I leave that to the experts.

Hope this helps you grasp what is going on with your heart.

My hips are next on the medical merry go round. But in the meantime I love my new valve.

Sooty

[Parkhome in reply to Ageingfast]

thank you for your reply & I'm glad you are doing well, did they tell you at the time the synthetic valve lasted about 10years Did you have breathlessness at all. So when you got diagnosed how long did you have to wait before your operation, did they say carry on untill it got worst.

[Ageingfast in reply to Parkhome]

suggested life of valve was 15 to 20 years. Nowadays the valve has a facility to accept a new valve when the old one wears out. These things improve every year. Metal valves should last your lifetime.

Yes I was getting breathless. This worsened until I only stayed awake about 2 hours a day.

Once the stenosis became severe then NHS moved fast. The consultant rang me at home to tell me the situation was severe and that I would go to Basildon heart hospital very soon. However this was Covid at its worst and Basildon closed. Then Brompton then Harefield. All closed before I got there. I paid to go to the magnificent Cromwell hospital, being the only one my surgeon could find.

I then knew that I had just months to live so no one said carry on until it got worse.

Cromwell took me as an inpatient for the three pre op tests then to the ward for the op.

My op was observed by students. So I got lots of info I didn’t really want to know. They reckoned I had a few weeks to live. They also said my surgeon had better than 99.5% success.

I have an Edwards Resilia valve. Surgeons have their own preferences. Go with what they say.

I think it was four years from being mild stenosis. Then just one year from moderate to severe. But we all differ.

Sooty

[Parkhome in reply to Ageingfast]

can I ask about symptoms you had before they operated. I was syptomlesssyptomless just found out on premed for hip operation. I've been getting breathlessness when my heart is at rest, gp said it could be chest infection.

I'm not convinced as I've had 3 lots of antibiotics & a course of steriods.

I'm just hoping it's not my heart problem

because I don't know how I'm going to cope, with all the waiting & not being able to breath properly.

[Pefki]

My bicuspid valve was almost completely fused at birth so I had balloon dilation at 3 days to give me a little time to grow and then at 3 months had open heart surgery to open the valve which was successful and gave me an almost normal life until I was 26. Just not permitted to play competitive sports or diving and some preventative antibiotics for trips to the dentist. At 26, I started to feel tired, difficulty getting up the stairs, long time to recover from a bit of physical activity, and a new cardiologist gave me the news that a new valve was required and should be scheduled after further testing. Once the decision was made, the operation was scheduled very quickly. At 27, I had a mechanical valve inserted and 14 months later, things are good. The mechanical valve was what the cardiac team decided would be most suitable. I had asked whether the Ross procedure could be done but on the night before operation, the cardiologist told me it was considered too risky. Warfarin everyday is a bit of a pain and INR blood tests pretty much every week are time consuming at the hospital. Apart from that, business as usual.

[Cat04]

I had my bicuspid valve replaced with a bovine valve last year when my stenosis reached 'severe'. The lifespan of the valve is 20+ years and should further intervention be required it can be done by TAVI.

The surgeon chose the tissue valve for me as it was already known that I was unable to maintain a stable INR on warfarin. I still have to take apixaban as I have a variety of arrhythmias.

My dilitation of aorta was borderline for repair or replacement but when the surgeon looked at it intraoperatively he decided it didn't need doing.

It could be many years before you require the valve replacing, if at all, it is normally only operated on when it becomes severely stenosed. Your aorta dilitation and valve will be monitored to assess the speed of deterioration. The tests that you are having now provide the baseline measurements for comparison in future scans.

[devonian186]

I am not qualified to comment on your various medical ailments and for these you need to be checked out.

However I do want to note we are coming very suddenly into peak hay fever season. This can be triggered off by a number of plants, but in our case it is the very fragrant flowers on the Torbay Palm. It makes my wife and I very breathless and we need to come indoors although we don't really suffer from asthma or hay fever. Not helped by the councils letting grass verges grow, which are now busily dispersing pollen.

I don't know if there could be anything local setting off your breathlessness, which might be quite unrelated to the other conditions you describe.