mitral valve repair wait

[Traveldreams]

Was told in December last year that I had heart failure and in March was put on a waiting list for mitral valve repair, estimated to be a wait of 3-6 months. Still waiting for my op but in addition to the expected issues (tiredness, breathless upon exercise, can’t lie on my left side etc) I have had three bouts of sickness and diarrhoea in the last couple of months. Anyone else experiencing this and how long have other people waited for similar treatment?

Thanks

[Taviterry]

After three months "on the list", I couldn't get any idea of a date from an NHS hospital for a TAVI (and if it had allocated me a date, I would have had to ring up "after midday" to see if there was a spare bed ). Earlier this year a friend was told that she needed a pacemaker and there was a six-month waiting-list, so she borrowed money and went private. And any dates would be subject to NHS strikes.

[Etzel]

I went on the list for aortic, mitral and tavi in Nov 22 and was told approx 6 months, going in for pre-op tests tomorrow with expected date in Jan (not finalised yet). That's in the Harefield catchment, your area could of course be different.

[Traveldreams in reply to Etzel]

Thanks for your reply, so interested that you were given same timeframe and it has been over a year. Sounds like Harefield and Papworth are having similar issues then.

Hope your op happens in January. The stress of waiting is awful. Good luck and I’d like to hear how you get on!

[petrh63]

Hi, a bleak year you have had. Hope things improve for you soon.

My ordeal in Switzerland was a little different. Three weeks of pretending I had a chest infection before appointment at the docs on a Thursday morning. Friday at 1130 heading into anaesthesia and pre-op. All good. 8 days in hospital (anaemia) then direct to rehab clinic for 3 weeks. Started gentle rehab but third week in the hills walking through snow and playing games - from 8am (very Swiss!)

3 month check - problems. Repair not holding tight and appointment to be made with surgeon. That was a three week wait then a month later back in surgery for a replacement valve.

Time scale October 30th 2021 to April 4th 2022 for both procedures.

Glad I was here in Swiss.

N.B. Semi private health system and the insurance for two costs more than the mortgage or a similar rental. (Nor 10 year austerity plan!)

[Traveldreams in reply to petrh63]

sounds so much better, to be fair a family member had a similar issue in the UK in 2016 and at that point it was a 9 week wait from diagnosis to op. We’re just a bit broken now!

Thanks for taking the time to reply.

[Sav100]

I had a mitrial valve replaced in September, was told in July 2022 that it was urgent, pre op done in December of that year, doctor said 5-8 months, finally got the call on the 1st September for op to take place on the 7th. Felt like it would never happen but when it did everything moved so fast, sounds daft best thing I ever did. X

[Traveldreams in reply to Sav100]

Thank you, sounds good to hear someone with a long wait but positive outcome. Thanks for replying!

[Claire_42]

Hi Traveldreams, my partner found out in Dec 2022 he needs a mitral valve repair, given an estimate of Aug-Nov 2023 for the op. He had all the tests done throughout this year, had pre op appointment in mid-Nov with a date at the end of Nov for the procedure at Papworth, but at the very last minute his op was cancelled so we now don't have any idea of how long the wait will be.

[Traveldreams in reply to Claire_42]

how awful to have it cancelled last minute, no wonder I’m still waiting then. Hope he’s doing okay. Thanks for sharing.

[LSCE]

Seems like a postcode lottery with regards to waiting time for NHS procedures. Which is so unfair. Have you spoke to your surgeons secretary, just ask if any idea on wait times, if your getting worse advise your consultant. Good Luck.

[Traveldreams in reply to LSCE]

Thank you, I have spoken to her. She indicated my op would be no later than November due to the severity of my condition. I think industrial action has lengthened the wait which is understandable but worrying. Have had a couple of rough days and feeling a bit sorry for myself! This forum is very helpful though. Thank you for your response.