aortic valve stenosis

[Greatoak1]

In 2022 I had a hip replacement following covid infection as it affected the synovial hip fluid and was then alerted to the fact that there was a problem with my aortic valve. I need to have aortic valve replacement and am currently on the waiting list. In my first consultation the cardiologist said that at 69 years of age I was too young for this procedure! I asked whether TAVI was possible as I am the sole carer of my husband who has Parkinsons and is rapidly deteriorating. He finally agreed to this after another long few months and I was given the go ahead with him saying I would be a perfect candidate and in good hands for TAVI. Fast forward and I meet the surgeon who is very happy to go ahead with this less invasive surgery. A letter then arrives which refers me back to open heart surgery without any explanation. Apparently the opening to the aortic valve is too narrow. The two surgeons have had the CT scans from day one so surely this would have been noted. I know there are financial constraints going on as I live in Wales. I understand that Papworth hospital is a centre of excellence for cardiac surgery and as such they may be able to help me even if it necessitates going private. I am lost to know who to contact so would appreciate any advice and thank you very much.

[Hanibil]

Hi I had aortic valve replacement by minimal invasive surgery in 2005. At the Wellington hospital London. The surgeon was a Mr Roberto Casula he is one of the best. Give him a ring, he also works for the NHS.

[Greatoak1 in reply to Hanibil]

Thank you so much for replying and I will definitely follow up your recommendation.

[Ageingfast]

Dear Great Oaks

What a dilemma. Your husband needs your care. You need the op. Regret to suggest that you are not too young for a new valve. Perhaps that was a compliment and not a medical based fact.

I had the choice of TAVi or OHS and there were two experts in those options who came to discuss the pros and cons. The point made to me was that TAVi does not always work in which case they would have to proceed with OHS. I did not have long to live so perhaps OHS was the right option. My op was observed so the theory was discussed to help the students.

The other point was that the surgeons only know certain technicalities once they access your heart.

To add to your problem, if you go OHS then you will need many weeks of recovery time. I needed about 14 weeks. You can’t do physical caring for hubby during your recovery. You categorically require people to care for you in the first, say, six weeks. Minimum.

I went private and the cost was £43,000. That was four years ago so it’s currently no doubt a lot more nowadays. Like many private health issues, you won’t know in advance as to the final bill.

I just wonder if your husbands life expectancy is the bigger issue. Just maybe you could take the highly undesirable option of delaying your op. Highly is the key word.

Or could alternative care be arranged for hubby whilst you have the op and your after care.

I got worse and worse approaching the op. I could hardly walk let alone care for someone else. My extreme delay was due to the covid.

I wonder if you are close to needing the op. You go through stages of mild, then moderate, then severe stenosis. And then you become critical.

With hindsight, I had a problem with stumbling backwards, which was my final warning.

There are many on this site who can advise you. What I strongly urge is that you do not surf the net for info. Especially do not surf Facebook. BHF is the place to be.

Four years on, my Edwards Resilia valve is behaving perfectly. And I still feel the joy of being given my life back.

Apologies for the long reply. But I sense you need some TLC.

Sooty

[Greatoak1 in reply to Ageingfast]

Thank you so much for sharing your experience and glad that the surgery went well for you. The waiting and overthinking is quite exhausting and I really need to have this surgery or my consultant said I will go into heart failure, bit of a catch 22 situation. Will let you know how things go eventually

[highburyted]

hi

I had my aortic valve replaced last year. I’m 67. I have copd and very much overweight due to hardly moving for three years due to the valve. The surgeons are excellent they know what they are doing. Mine was done by keyhole surgery but I know a chap on my cardiac rehab exercises classes that had open surgery and he’s absolutely fine. I had mine done at Basildon hospital in Essex which is quite renowned but where ever you have it done I’m sure you’ll be fine.

During the wait your mind will think the worst

Highburyted

[Greatoak1 in reply to highburyted]

Thank you so much for your reassuring words and glad that you are well.

[SuperFluff]

Hi Greatoak1. There was an article in the Daily Mail online on Sunday stating that people were being given open heart surgery for mitral valve issues instead of minimum invasive based on cost grounds rather than clinical need - when most people would in fact benefit from minimum invasive. The same could possibly be true for aortic valve surgery. Anyway... have you spoken to the UK Valve Association - Heart Valve Voice - maybe they can help. Personally I would also contact my MP and explain your situation. They may be able to lobby for you. You seem to be in a really difficult position. İ wish you the best of luck x

[Greatoak1 in reply to SuperFluff]

Thank you so much for your insight as I cannot understand how less Invasive surgery is more expensive than Open Heart. I will certainly now contact the UK valve association and thank you so much.

[SuperFluff in reply to Greatoak1]

İ cannot understand how less invasive can be more expensive either. İt takes less operation time, less recovery time and less chance of complications! İf you also look up the Valve for Life group - this is surgeons, MPs etc lobbying the NHS for more less invasive surgery as we have lowest rate in Europe. İt says of TAVİ that in the UK it is limited with profound geographical inequity. Surgery type should not depend on where you live!! Good luck.

[Greatoak1 in reply to SuperFluff]

Thank you so much for your reply and information on the Valve for Life group which is very interesting.