HELP OZAKI PROCEDURE REQUIRED

[Gill8]

Hi can anyone help with information, my son is 25 and a labourer, he has a bicuspid valve rather than tricuspid. He does not want a mechanical or pig valve replacement , neither does he want to take tablets for the rest of his life and would like the OZAKI procedure. But his hospital has said that the OZAKI is still research within the UK and they can only offer the mechanical or pig valve replacement. He has only found other procedures that seem to be better for him, which he has not been told about. Is there anyone out there willing research or not in the UK that will do the procedure (NHS not private).

[BHF_Nurse_Maureen BHF Nurse]

Hi Gill, and welcome to the Community.

The Osaki procedure is relatively new to the UK, but is available on the NHS and is offered at the Royal Brompton Hospital in London as well as at Bristol Royal Infirmary. If you search the websites for both of these hospitals you can find out some more information that your son could discuss further with his consultant. I hope this is helpful and wish him all the best with his treatment. Maureen

[Gill1026]

I was recently in Bristol to have the Ozaki procedure done. Unfortunately on the day things did not go to plan and they had to give me a mechanical valve. It was Proffesser Cuputo was the surgeon who was to do the Ozaki.

[gal4God]

I’ve had a valve made from my dna. I had to give a wee sample and it’s so worth it. Bern told it lasts 3 - 25 years but u have to keep ur teeth healthy for it to last long, as infection from ur mouth wreaks heart valves.

[Fortepiano]

I think the problem is that only the hospitals which do children's surgery offer anything other than tissue/mechanical valves. These are fine for most people but young people in their 20s and 30s would sometimes be better off with an alternative, like Ozaki or a Ross procedure or a decellularised homograft. I feel strongly that young people in need of a valve replacement should always ask to be referred to a centre which offers all the possibilities. Longevity of the valve is important but so are the haemodynamics.

I am older but wanted a Ross - I was an NHS patient fortunately already at a congenital centre but had to change surgeons and was prepared to change hospitals to the Brompton. You can speed things up if changing hospitals by making a private appointment with your desired surgeon (c.£250) and then asking to be transferred to his NHS list. You do have to be pro-active in moving things forward as it seems sometimes to take for ever for letters to go between consultants.

Your son should be aware that with the alternatives he is still likely to need another operation in the future.