Heart murmur, aortic stenosis

[HarryBell]

Nearly ten years since diagnosis, waiting to deteriorate so operation can be done

[Fredders]

Hi Harry

I was diagnosed with a heart murmur, regurgitation, at about 16 and didn’t have to have my op until I was 52, so hopefully you’ll have a long wait.

Wendy

[HarryBell in reply to Fredders]

Hello,

Well it has progressed to Moderate to severe, last year there was no change and I am active going to the gym most days, but I keep my heart rate to under 100- still can work out quite well. About 30 years ago my then GP noticed a murmur but did nothing about it, only 10 years ago, while in Greece did a really good cardiologist tell me that I needed to be properly checked. So I am being checked every 6 months now. I had hoped that I might make it till the new valve (Cambridge University) is on the market as it sounds very good- no turbulence no blood thinners.

You seem to be doing well- when you were 16 it must have been 'trivial' as they say and it took 36 years to progress. I guess you got a mechanical one- how are you doing?

[Fredders in reply to HarryBell]

I was checked every year from 16 and yes it was very gradual. They think I was probably born with it. Had a second op last November as the tissue valve I had the first time had started to leak. This time I’ve had a mechanical one as it reduced the risk of having to have another op in the future as I had to have a splenectomy in 2016. I was worried about the warfarin, but I’ve managed to keep my INR levels within target since I left hospital, so not as bad as I expected. Recovery went well and I’ve been back at work for about 8 weeks. Still get breathless when outside, but getting easier as the weather has warmed up.

[HarryBell in reply to Fredders]

how long did the first tissue valve last?

[Fredders in reply to HarryBell]

Unfortunately only 6 years, but was told 10-15 years when I chose the tissue one. I think if I’d known it would only last so few years I would have had the mechanical one the first time, but hindsight is a wonderful thing!!!! I know other people who’ve had the tissue one and it’s lasted nearly 20 years, just my luck ☹️

[athi0110 in reply to Fredders]

Well the world record for survival with an original mechanical valve was announced last week as 50 years, so someone has been taking warfarin for at least that long. They are developing new thinners, much safer than warfarin and just as good for mechanical valve patients, so may e you will be able to swap in the not too distant future, have a nice evening.

[IanGordon]

You will probably know when the time has come. My experience was that from surprise murmur then to aortic stenosis and to surgery was about a decade but my decline in exertion tollerance has been rapid over the last 3 months. Also meals reduce activity levels and bring on Angina symptoms. Thankfully both my cardiologist and surgeon agree that I need a fix based on the various bits of data from echocardiograms and symptomatic problems. So just AVR of my pseudo bicuspid valve. Five weeks away and counting. I would encourage you to detiorate proactively so that you reach the operating table in the best physiological and psychological condition. This helps ensure you recover well and derive maximum benefit from your surgery. Be mindful of diet and exercise and work within the constraints of your stenosis. Try not to let it define you. Good luck and patience!

[stevejb1810 in reply to IanGordon]

I had to smile at the idea of ‘proactive deterioration’ as if anyone would actively be seeking to deteriorate, but I agree 100% with the sentiment - the better prepared you are physically and mentally, the better will be you recovery

Steve

[IanGordon in reply to stevejb1810]

Steve hi. Purely trying to contrast accepting /awaiting your fate or alternatively, trying to mitigate your symptoms, so far as your mind and body will allow. I believe you can make a difference and it's there for the taking. I'm extremely lucky with no serious comorbidities so probably have a slightly simplistic view but my sentiments are nonetheless genuine although could probably have been better expressed. No false bravado though it's still scary, big life event stuff.

[stevejb1810 in reply to IanGordon]

Hello Ian.

I understand exactly the point you were making and I do agree with you, hence the like. I just thought it was an amusing way to put it - perhaps speaks to my sense of humour

Steve

[HarryBell in reply to IanGordon]

Thanks for your comments, I understand what you mean. Currently I am asymptomatic, have no other conditions and go to the Gym pretty much each day, I aim to lose 10kg over the next few months to get my BMI well within the healthy range, and I monitor my activity levels at the gym by keeping tags on my PI (performance indicators), so I can track how I am doing. For the past year I have not deteriorated at all, so maybe I am doing something right?

[Lizzie20]

Hi, I thought it was amusing too but isn't that the way to be to keep it light, also to find the right hospital. I'm interested in the new valve you mentioned at Cambridge university could you give more information please.

Liz

[HarryBell in reply to Lizzie20]

Dear Lizzie20

I have been informed that Professor Geoff Moggridge, (Department of Chemical Engineering and Biotechnology at the University of Cambridge): provided the following information during an update that he gave as part of the BHF Legacy campaign.

1. Valve surgery

The very first valve operation, done on the aortic valve, was in the mid-fifties. The evolution of valve surgery since then has been incredibly fast. The mechanical valve and the tissue valve were developed, both of which have pros and cons. The mechanical valve lasts a very long time, but anti-clotting drugs such as warfarin need to be taken. These can have unpleasant side-effects. The tissue valve doesn’t last as long, but more recent developments means they are constantly being improved. Even more recently, trans catheter valve replacements have been taking place. This is when a valve is fed up through a catheter inserted into the groin, making it far less invasive a surgery. These are now being increasingly used.

2. How research has made a difference to people.

The power of imaging is incredible – imaging research has come a long way. By improving imaging techniques, doctors can now better diagnose valve problems, and also use imaging to treat patients too. For example at a conference I learned about a new product called the harpoon. When a valve isn’t attached properly to the heart’s chamber, it can prolapse and reverse in on itself. The harpoon is a self-knotting string that shoots through the valve leaflet, and knots from the other side. It can then be pulled tight and puts the valve in the correct place. It can watch it in real time, and adjust the position accordingly. This kind of research will improve patients’ lives and outcomes. There’s also been an attempt to make a better anti-clotting drug than warfarin, which scientists are working on. This will hopefully lead to a new drug that has less side effects.

3. A lot of research has been carried out on the aortic valve, but less so on the mitral valve. Researchers are really pushing now to make the same advancements in mitral valves. The harpoon mentioned above is an example of that. Also suture-less valves are a huge advancement for scientists.

4. Your research.

Thanks to BHF funding, we have created a polymeric valve which could be used in the future for mitral valve replacements. We have to test the valve in two mechanical heart machines. One machine reproduces the same pressures and flow rates as the real heart, pumping in real time, to test how well the valve opens and closes. The second machine tests whether it can last for up to five years. We do this by speeding up the machine up to 30 times its usual speed, as we don’t want to wait five years to see!

We’re also about to start a collaboration with the Translational Biological Research Centre in Bristol, testing the valve in animals. This is scheduled to start in April. Down the line, we can use the findings from this trial to develop a new mitral valve that could benefit people.

....................................

I understood that work on an Aortic valve replacement is underway = but from the information above (from BHF) it does not seem clear. Have you had surgery? How are you doing?

All the best

[HarryBell in reply to Lizzie20]

Hi Lizzie no doubt you have heard about the new Edwards tissue valve that has a projected life expectancy of 30+ years- hope you are well