How long was your wait for surgery? - British Heart Fou...

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How long was your wait for surgery?

Dannymakesdrinks profile image
23 Replies

I am presently awaiting a date for an MVR (Mitral Valve Repair) due to Severe Mitral Regurgitation (Symptomatic also)

I’ve seen my surgeon at Liverpool Heart & Chest hospital back in May and am still waiting so we’re on approximately 5 months now.

I have called in the past querying when I’ll find out but they’ve said the second they know they’ll call me.

The limbo preceding surgery I am struggling with and dealing with recovery after and supporting oneself.

Any tips or advice/anecdotes?

How long was your wait also?

Thanks

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Dannymakesdrinks profile image
Dannymakesdrinks
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23 Replies
Bluedolphin123 profile image
Bluedolphin123

Hello

like you I needed MVR with severe symptoms , that was March 2023 and I was told 3 months wait . By August it was obvious I’d been forgotten so was then referred but when I got admitted to hospital in February 2024 with problems the consultants realised my hospital hadn’t received a referral for me so lots of admin errors . I finally had surgery 8 weeks ago and going great but don’t be like me and assume all is happening behind the scenes as it wasn’t and as you know the waiting is the worst!

On a positive the surgery and recovery is my much better than I imagined so try not to worry .

Good luck and do let us all know how you get on 😊

Dannymakesdrinks profile image
Dannymakesdrinks in reply toBluedolphin123

Hello

Thank you for your response to my query, I have seen my cardiologist again recently a week ago.

I sat down in his office and his first question was ‘whether I had my surgery yet or am I still waiting’ to which I was like

“I’m still waiting 🫤”

I proceeded to tell him how since march when first referred for surgery I have been to A&E twice with chest issues (chest pain and my breathlessness has increased markedly) to which he explained after dictating a letter ‘should’ speed things up with the surgeon.

Hopefully I should get a phone call any day now I’d like to think.

I’m not sure if I should pester the surgeons secretary again…

Kind regards

Danny

Ageingfast profile image
Ageingfast

Dear Danny

This waiting for an op is by far the worst part.

I needed a new valve due to stenosis.

This stenosis was found five years before I got the op. The stenosis started as mild, then moderate, then severe. Once it was seen as severe then the waiting time was minimal. However, all the cardiac wards were closing due to covid. I then entered an odd stage of waiting for my condition to be critical. Not good. So I went private and got treatment within a month.

But the good news is that, once you go in for the op, all is fantastic. Cardiac wards are a cut above most. Always someone on hand to help you through the op, then through the ICU/HDU and off to your home. About one week. Once home I needed three months recover. But I am elderly and you are young, so recovery should be nearer to two months rather than three. the first six weeks you need someone to care for you. You will be improving fast, but need care. If no one at home then a care home or respite centre would be needed. Or you could maybe go to family elsewhere.

The great thing is that you will feel improvement every day. And by two months you will be fully fit.

During recovery I walked every day. Just a few yards on day one but gradually building up until you walk a mile. I needed to talk whilst I walked. Talked to myself, quietly.

I also needed to sleep whilst sitting, not lying flat. I simply built a five pillow support. Also had another pillow under my knees to stop sliding down.

Heart surgery is simply wonderful. Nothing like other procedures. I got given my life back.

Best wishes

Sooty

Dannymakesdrinks profile image
Dannymakesdrinks in reply toAgeingfast

Hey Sooty

Thank you for your in depth reply to my query, and detailing how it went for you.

I am slightly worried about after care as I live alone and have no family to look after me post op or how to go about acquiring care.

Who or where do you think I should question this? BHF or is that a surgeon question.

I do wonder how I’ll support myself physically during recovery and financially, I’m trying to see what benefits I’m entitled too as I’m unable to work now due to my symptoms.

It kills me not being able to work and financially support myself, never mind the mental aspect of things.

Thanks again Sooty

Ageingfast profile image
Ageingfast in reply toDannymakesdrinks

It is essential to have care for some while. I think the key is that the patient will need to be discharged in to someone’s care. In your case, you need to be given a place, possibly quite a smart care home. You can not be discharged in to your own care. The hospital will be keen to find you a place as they don’t want anyone bed blocking in the cardiac ward.

You could well try the BHF nurses.

I know I was asked about my after care and the hospital checked this with my wife. Regret I don’t recall when this happened. I am so fortunate to have a wife at home and money in the bank.

There are certain things to do during rehab, such as not lifting anything above head height. Nothing much medical, just a visiting nurse to remove the “ stitches” and plenty of tablets to swallow.

Good luck with this

Sooty

Dannymakesdrinks profile image
Dannymakesdrinks in reply toAgeingfast

Thanks Sooty

Your reply is quite informative, I do wholeheartedly appreciate. I’ll give the BHF cardiac nurses a bell for some more insight, regarding the lack of help post op.

I’ll pop an update here when I know.

Thanks Sooty 💪

maggie80 profile image
maggie80

Hello

My appointment to see the Heart Surgeon 6th August 2023. I had a quadruple Bypass and a replacement heart valve. I was in hospital 7 days. Broadgreen,Liverpool. Nov 10th -17th 2023.

Dannymakesdrinks profile image
Dannymakesdrinks in reply tomaggie80

Thank you for letting me know of your wait Maggie

Much appreciated getting an idea

Danny

Dannymakesdrinks profile image
Dannymakesdrinks in reply tomaggie80

Thank you for letting me know of your wait Maggie

Much appreciated getting an idea

Danny

maggie80 profile image
maggie80 in reply toDannymakesdrinks

Hi, Don't worry about anything. If you think the wait is to long. Phone the secretary.

Dannymakesdrinks profile image
Dannymakesdrinks in reply tomaggie80

I’ve spoken to the BHF Cardiac Nurses on the subject and they mentioned about the ‘cancellations list’

I’ve been back in touch with the secretary and have elected to go on the cancellations list.

Been currently waiting since diagnosis, about 6 months now.

Hopefully soon

maggie80 profile image
maggie80 in reply toDannymakesdrinks

Hold on tight.

Traveldreams profile image
Traveldreams

told urgent in February 2023 and would be within 3 months. Operation 31 January this year. Back at work part time after 13 weeks and full time at 4 months.

Dannymakesdrinks profile image
Dannymakesdrinks in reply toTraveldreams

Thanks for your reply

It’s helpful getting an from other’s timescales

Traveldreams profile image
Traveldreams in reply toDannymakesdrinks

The waiting is the worse bit! You’ll be fine once you have a date.

Dannymakesdrinks profile image
Dannymakesdrinks in reply toTraveldreams

Thanks it is indeed seriously rough this waiting, the limbo and life being on hold 😭

Thanks for your kind words

Beatles1956 profile image
Beatles1956

Assuming that you are able to, have you told your surgeon that you will take a cancellation? I did, and my wait was not very long at all. In fact, when I received the call, I had 2 weeks to get myself organised (just before Christmas).Of course that was probably just serendipity, there is no saying you will be as lucky, but it's worth a try!👍

Dannymakesdrinks profile image
Dannymakesdrinks in reply toBeatles1956

I think it may be prudent for me to call them, mentioning that ‘I’ll take cancellations’

I just assumed they’d call me in the event of, not to put myself forward for it. So I appreciate that information!

My surgeon when I originally saw him on May 22nd he specifically said then this need to happen ‘within the next few months’ and we’re not near end of September.

Last I spoke to his secretary, it showed ‘nothing in the diary for me 🫤’ and ‘it should be toward the end of the year 😞’

Thanks for getting back to me

Danny

Dannymakesdrinks profile image
Dannymakesdrinks in reply toBeatles1956

Just to update, I’ve got myself on the cancellation list, I do hope something comes through soon.

Much appreciate the suggestion mate

paulcongleton profile image
paulcongleton

Hi. I waited exactly 12 months for my mitral valve repair at wythenshawe. I was asymptomatic for years, then March 23 they said it just started to deteriate and put me on the list for surgery. End of February this year had the op, in ICU for 5 days post-op with collapsed lung but made a decent recovery, driving after 8 weeks, back in work (physical job) after 12 weeks.I would suggest if you feel like symptoms worsening get in touch with your hospital.

Dannymakesdrinks profile image
Dannymakesdrinks

Hey Paul

Thanks for getting back with your experience and letting me your timescale.

With regard to letting them I’m getting worse. I’ve not long seen my cardiologist again approx a week ago and mentioned to him about my deterioration ( I’ve had to stop working, seen A&E twice since I’ve seen him in march/april)and he dictated a letter to the surgeon and said it ‘should’ speed things up

But it’s all just a big ‘we’ll see what happens’ 😕

Happyrosie profile image
Happyrosie

about post-op recovery, with no-one to support you. Maybe give the BHF nurses a call, they might be able to advise you.

and about your Income - give the citizens advice bureau local to you a ring, There’s probably a waiting list for advice, or they might refer you to one of their very helpful information pages or on government website or whatever. I’ve found them to be immensely helpful on guiding you to the right sources of information,

10gingercats profile image
10gingercats

also put yourself on the depts cacellation list .It is a good way to get seen sooner. I do it all the time. Someone cancels and then they ring you...usually it is with a few hours notice.

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