TAVI at John Radcliffe soon - Any advice/patient experience warmly welcome

[Daughterhood24]

Hello BHF forum,

This is the first time posting & would be so grateful to hear from you.

My lovely mum has a TAVI procedure very soon at John Radcliffe as they've deemed it's now extremely urgent she's treated - BAV severe symptomatic AS (having been referred from local hosp).

Whilst we've tried to research, haven't found much info about the team or their outcomes re. TAVI other than the general rating of the hospital so looking for more patient experience at the Oxford Heart Centre.

It would be great to hear from yourselves - either experience of TAVI or John Radcliffe (if you don't mind). She's got other co-morbidities so this is a very anxious time and hoping we can glean more patient-focused info.

Thanks so much.

[10gingercats]

The John Radcliffe cardiology is my hospital....and for cardiology. I had a hole in my heart fixed there 10 years ago.I was in my early mid 70's at the time.I am now with the congenital heart dept. and find them very good .I do not know much about the surgical team but they have given me advice on surgery and I see a cardiologist twice yearly with an echo. each time so I have had good experiences with them. Jim Newton was part of the team that did my hole in the heart with Oliver Ormerod as the lead cardio. Sadly he died recently.

[Daughterhood24 in reply to 10gingercats]

Thanks for taking time to reply 10gingercats - glad to hear you've had a good experience & sorry to hear about the member of your heart team. Appreciate your input as can't find much form the surgical pov but it would seem that the Interventional Cardiologists perform the TAVIs rather than surgeons or maybe part of a wider MDT. New territory for us so grateful of the forum. All best

[10gingercats in reply to Daughterhood24]

Yes. I suppose mine was an Interventional surgery/procedure. as I had a catheter through the groin to insert the 'gadget'that closed the hole in my heart. From what i understand it is a pretty safe procedure ........Tavi through groin.I had a sedation for it with morphine top up as they proceeded.But you can ask questions ahead of time about what they will do re.anaesthetic or sedation.

[Daughterhood24 in reply to 10gingercats]

Thanks again for your reply - yes, that's the route I believe & incredible what is possible. Appreciate reminder to ask questions beforehand too - we've been so busy dealing with cancer treatment that hadn't factored AS would pop up over last 6mths.

[Taviterry]

I had my TAVI there last July and found everyone very pleasant and efficient. My ward was on a low level, so getting a good mobile signal was difficult. TBH I thought that other hospitals offered a better aftercare package, including rehabilitation, and you may wish to inquire about this. (Another hospital where I could have had the op provides a remote aftercare service, with weekly check-ups on progress.)

Presumably you'll be delivering Mum to the dedicated entrance to the Heart clinic? As I had to be there for 0730, I stayed the night at a nearby boarding house and walked the ten minutes to the John Radcliffe, entering through the main entrance and having a job following the internal signs to the heart unit. In the end a member of staff took pity on me and delivered me to Reception.

The day after the op, I accumulated 70 minutes of walking in about six stages around the hospital. "You can walk down to the shops [inside near the entrance]," I was told.

Where the new valve was inserted was a bit puffy for a few days. A bit more alarming was the large blue-black stain around where the tracker dye was inserted. "Don't use Dettol," on it I was told, which rather puzzled me. I think that it was bruising and it gradually decreased in size.

I might have been discharged after one night, but was kept in for a second just in case I needed a Pacemaker. On discharge I could look after myself, but stayed with relatives as a precaution.

[Daughterhood24]

Thanks for sharing your experience Taviterry - really helpful to hear. We haven't heard anything about follow up/rehab so will be sure to have that as a question.

Incredible you were up & walking day after. Will have to keep everything crossed. As they've said it's higher risk, think we've all been in a bit of a flurry so finding this space has been really helpful. Reading the stats & risk scores make it a bit daunting otherwise.

Good you chose to stay with family for a bit - will be staying with mum after. Hope you've had a good recovery since even if you didn't get the weekly remote aftercare, which sounds like something many ppl would benefit from.