second valve replacement

[Rog_S]

I had an aortic root and valve replaced in 2017 (mechanical valve) after combination of poor valve function and swelling aorta. This problem was found during a transasophogeal echo in advance of an ablation to tackle bouts of disabling AF that were only ever resolved by electrocardioversion. In the last month I had 2 events of AF both of which were followed by electrocardioversion. The second was done in a Saudi hospital that was next door to the hotel I was staying in when the AF kicked off. They did a transasophogeal scan prior to the electrocardioversion primarily to check for clots but I’m on warfarin anyway.

They reported that my mitral valve (previously reported as mildly regurgitating) is now severely regurgitated and must be replaced. It is already leading to weakening of the ventrical. Now trying to get something done on NHS and hope to present my echo scans to my cardiologist- I managed to get a copy on DVD.

My question is: is there a standard for mild medium or severe regurgitation and what priority might I be. How will NHS assess my priority? How much does this cost to go privately? It would probably entail opening up but there was a comment that some people have this through minimal invasive surgery. I’d chose a mechanical valve as already on warfarin.

Any other thoughts or suggestions welcome.

[DodgyTickerMum]

Hi Rog_S,

Sorry to hear your news. I was unfortunately diagnosed with a prolapsed and regurgitating mitral valve around this time last year - graded as ‘severe’. I was told the wait on the N.H.S to have surgery would be at least a year.

I believe once graded as ‘moderately severe’ or ‘severe’ you’ll be added to the operating waiting list. I was told this is dealt with strictly in order of diagnosis, unless you were to present at A & E as an emergency.

You could always contact one of the heart hospitals’ to enquire of the base price if you were to have the op undertaken privately - (assuming you don’t have insurance cover?)

However, as my Cardiologist advised to me, it is the cost of being in I.C.U that can significantly increase the overall surgery price. Obviously, no one can predict the outcome of the operation and whether or not there will be any complications, that may require additional procedures or a longer hospital stay. There will then be the ongoing costs post surgery for after care / monitoring via your Cardiologist, which may also have to be factored in.

I hope you get some answers. Good Luck.

[Rog_S in reply to DodgyTickerMum]

Many thanks. I did have insurance for the first procedure but they refused to honour it as the aorta minor swelling was picked up previously following earlier AF events and it was therefore pre-existing and I’d changed companies. I expect the same would be the case for the mitral valve since that was also there, but only mild at the time. I cancelled the insurance anyway. I’ll see what the wait list is and might have to say goodbye to the new car from pension and get my cheque book out, since as mentioned earlier, this leads to weakening of the ventricle that can be observed in my case. When I said to the cardiologist “ what about a wait of 6 months or a year he said: “No, you must have this done in weeks”.

Good luck in getting your procedure. I guess I’d be well behind you on the list.

[DodgyTickerMum in reply to Rog_S]

Fortunately I was able to have my surgery in June last year, via my Husband’s business cover. Certainly no walk in the park and sadly still having issues now - so not the ‘quick fix’ we had hoped for.

I wld def make enquiries re cost, if you are in a financial position to do so. I was reading my surgeon’s discharge notes recently and whilst they did manage to repair my own severely damaged valve, it wouldn’t then withstand my blood pressure - (which is low at the best of times). So they made the decision in theatre to fit a mechanical valve. At my pre-op meeting I was informed that they don’t know exactly what they’re dealing with until you’re in surgery. From what he said, I may not be here now if I hadn’t had my surgery when I did.

It sounds like you’re in contact with a U.K Cardiologist now, so hopefully they will look at your Echo results and make the right call. Hope it all goes well for you.

[Rog_S in reply to DodgyTickerMum]

Thanks. Good information. I’ve got one mechanical valve already so will probably sound like a tractor!

[Mitchum]

Relating to my experience, I had a leaky mitral valve which was monitored for many years until it became "moderate to severe". The cardiologist told me the waiting list for surgery was about 15 months. I asked what would be the result or consequence of waiting and his reply confirmed what I suspected, i.e., the heart would be more damaged. I was already struggling with breathlessness at the time and he said that probably wouldn't improve after surgery if I waited that long!

I was very fortunate to have insurance through my employer and decided to have private surgery ASAP. After all the pre surgery tests and checks I was in the theatre within one month where the hoped for "repair" couldn't happen as there was little left of the valve. A mechanical replacement solved the problem. If you have the money for it go private. It's your life! If you need to know anything specific PM me or come on here and ask. I actually take great pleasure in replying to posts! Take care

P.S. The irritating part was that the surgery was performed in the SAME theatre, using the SAME equipment and carried out by the SAME team (NHS employees) who were getting extra pay for treating the SAME patient in normal hours!

[Rog_S in reply to Mitchum]

Mitchum. Many thanks. I’ll see what the NHS wait is once they have seen and maybe redone the scans. You are right and I can always work for another year or two to pay back my pension!!

[Mitchum in reply to Rog_S]

The crux is, longer wait equals more damage!

[sunlovah in reply to Mitchum]

Was this done via keyhole, could you please give an idea approx of cost private, maybe pm ? Thanks

[Mitchum in reply to sunlovah]

Hello . I have sent you a PM.

[sunlovah in reply to Mitchum]

Thank you for replying and your helpful comments.

[Mitchum in reply to sunlovah]

That's ok. If you want any specific information just let me know.

[Lexi72]

Dear Rog_S I have not had my valve replacement yet as I am still borderline for the operation. I think ( but do not know)that the waiting lists are a bit more dynamic than people realise. If someone’s condition is very serious it may be possible to be bumped up the NHS list and also if you are willing to go for cancellations this may speed things up. If you are going private and can afford it I would go to a private ward of one of the major NHS heart centres it is the same doctors and you have the backup of a general hospital. My understanding is that it is very very expensive. A couple of years ago I saw the figure of 40000 quoted i. The UK (in the USA it can be much more)so I assume it is more now. It is a lot of money and the quality should be the same it is just speed of treatment. You can get a price if you contact the private wing of one or more of the major heart hospitals. Going into lawyer mode ask what the price covers and what extra cost there is if you need longer in ITU or a further operation if something goes wrong like an infection and whether you can insure against extra cost. When I could not any indication of timing for an ablation I spent 300 to see an electrophysiologist privately to ask about cost and timing (ablations are very expensive too) who advised I was being treated Ina good hospital in NHS and recommended I wait. Very good advice as I now have a date but I felt much better having spoken to someone so I stopped worrying . This might be worth doing if you cannot see a cardiologist on the NHS in the near future as it might give you reassurance about waiting. If you can afford it you can then make an informed decision best wishes and hope you are all sorted out soon

[Rog_S in reply to Lexi72]

Thanks Lexi. That is very helpful. A lot more than a hip then ! So let’s hope I either get bumped up the list or win the premium bonds tomorrow! I’m visiting the Saudi doctor tomorrow morning before flying home to get his contact details in case I need his support. He says that the ventricle is already weakening and it will only get worse. I suspect that won’t necessarily work but you gotta try!

[Rog_S]

Thanks for all the advice. 5 weeks to NHS appointment so set up online consultation with The Keyhole heart clinic for tomorrow. Have sent the TOE scan and reports for review and I’ll see what happens next. Anyone have experience of this firm?