Anxious waiting for surgery - British Heart Fou...

British Heart Foundation

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Anxious waiting for surgery

Purple1935 profile image

Hi

Just wondering how those like me waiting for Mitral Valve surgery are feeling not knowing when it will go ahead?

Are you still able to work ( taking into account Covid Restrictions)

Are your symptoms getting worse?

Anxious time not knowing when this will get sorted & how bad will my symptoms get

18 Replies

Hi there, my pulmonary valve op was cancelled a week before at the end of March. I have never really had any symptoms but it is mentally draining having further delays. I worry that although I was front of the queue before that others will jump ahead. Just because I don't have any symptoms is still a severe leak probably going on a long time I was told. My hospitals letter in March said no elective surgery at least 3 months with 3 separate priority waiting lists. If your symptoms are getting worse tho you do need to get in touch x

I’m sorry to hear your op was cancelled so close to the date... I totally agree that it is v draining mentally to keep your spirits up & support worried family... my symptoms seem to come & go.

It’s keeping positive & well that’s important Thank you for your reply & best wishes

Likewise. I think family members do worry for sure. I would be worried I'd get a date for the op but no family allowed to visit. then when I get home all those people willing to come and support me may have to now steer clear due to Covid Risks. So these things will make me anxious. This site is very good for keeping in touch with others in a similar situation. I suppose right now we have to trust the experts x

I would hope that patients line yourself who were due their operation & it was cancelled will be first to get done once it is safe to do so. How long had you been waiting for the operation before March?

Are you still able to work at the moment?

I was diagnosed with the leaking valve in April 2019 during unrelated tests. I was then told at end of July I'd need the surgery. Met surgeon in August and we agreed it would be done at the start of 2020. But other priority people took over and when I finally got the date it was cancelled.

So I'd hope they'd fit me in sooner than later than have it dragging on. I was born with heart defect and had surgery at 4yrs old but at aged 15 I was signed off with no issues. I'm 47 now so was a shock at the time as no symptoms at all.

I work from home with a laptop so I'm OK that way. Are you still working? x

Sounds like you have been waiting awhile then.

I am 55 fit & well with no history of anything, so came as quite a shock. Surgeon was hoping to get it done within 3 months but I cannot see it being done anytime soon.

I work in a high risk area so have been off sick for 3 months. Not sure what will happen in June when the sick certificate finishes. I work full time (long hours) & find myself getting tired & coping with palpitations & heaviness in my chest if I do too much.

Trouble is I could be off for months waiting for this op

That's not so good for you work wise. Hopefully your employer will be sympathetic. I would have had mines done before Christmas but was my choice and surgeon agreed January. But I think I'd be more anxious now if that makes sense as feel I'd be higher risk with the Virus. Best of luck tho and we'll keep posted no doubt x

Yes it is worrying having surgery at the moment. I know it won’t be option until it’s safe to do so & there will be a backlog...take care& let me know if you hear anything

TealGreen profile image
TealGreen in reply to Purple1935

Sorry you’re dealing with this. I was shocked to be diagnosed at 51 as well, although mine was atrial septal defect (hole in heart), also needing OHS.

A good tip I was given, was to focus on accepting what I couldn’t control, & only focus (/worry) on what I could. So I stopped worrying about the hole, which I could t change, & focused on any small influence I could have on timing. I phoned the surgeon’s secretary often, for updates on his schedule & to keep nicely asking about my timing.

Second, I’d suggest you explain/ mention many times about your life & work circumstances. I told my surgeon, then his secretary, that I was about to be made redundant & I’d have money worries if surgery delayed getting a new job - it’d be hard doing interviews during painful recovery, and it wouldn’t be fair to be off for surgery at the start a new job either. So I let them know my redundancy notice period & that I hoped they could use that. They never said much, but they did seem to schedule me near that timing.

Obviously covid is a clear blocker, but when they do start getting back to their lists, I’m pretty sure they try to take account of life circumstances. Find someone you can keep in contact with, as even just regular updates help with uncertainty & not having to endlessly put everything on hold meanwhile. Good luck!

Purple1935 profile image
Purple1935 in reply to TealGreen

Thank you for the advice... the NHS has done an outstanding job in dealing with the pandemic but now it mustn’t left Covid cripple it’s services to those needing operations that will in time save their lives& other treatments backlogging at the moment.

TealGreen profile image
TealGreen in reply to Purple1935

Totally agree, great job NHS, with need to keep rest going too. Things are behind but I’m seeing it’s slowly adjusting. They rescheduled a delayed scan for me, at a ‘safe’ mini-hospital, they’re doing consults via phone, and they seem to be getting used to working round things & resetting their treatment lists. It’ll take a bit of time but at least, most of our ‘specialists’ aren’t that directly involved in covid, so they have time available as soon as covid-free space/beds are available. Fingers crossed for you. 🤞

Do you think our terrible UK Covid mortality rate (compare it to Germany for example) is due to the general poor health of the nation, or the NHS' poor treatment?

I am so sorry. What a rotten time for you. I am afraid all you can do is to endure. I believe that they are starting to resume ‘normal’ operations. Good luck to you and carpe diem. Make the most of the small things in life.

My husband is still waiting too. He has severe mitral valve regurgitation with AF, high blood pressure, asthma and reoccurring episodes of gout, which we think the water tablets contribute to. Should have had his surgery end of February, cancelled once more due to lack of ICU beds (3 times cancelled). He was told he would be a priority then COVID-19. We were told once they were safely able to start operations again they would get back in touch.

Now he is anxious about them calling particularly the thought that it might be in a different hospital (in our Trust some hospitals are being made a non COVID-19 centre for electives, which isn’t the one he has been visiting although we imagine he would have the same surgeon; questions to ask when they do contact us) and he probably won’t be allowed my visits. He seems stable at the moment with his conditions. Mentally it’s tougher to deal

with. We would hope if he has the operation once recovered he’d be at less risk of coronavirus but having said that he is 70 next January so even after an operation I suppose that still puts him in the higher risk bracket.

I’m actually hoping that the Nightingale hospitals will be put to good use to help get electives going and try to catch up once safe to start them. Best wishes.

It’s a worrying time for you both...bad enough had a cardiac condition without having Covid worries & delays on top!

Unfortunately the Nightingale Hospitals are only set up for Covid symptoms & do not have facilities for patients with other medical problems or for post surgery.

Take care, stay safe & fingers crossed things will get moving in the right direction.

Thank you! Best wishes to you too!

Hi - I was referred to surgeon just as lockdown introduced so went through whole conversation (switched to telephone at last minute) confirming ready to go ahead (AVR + Aortic Aneurysm), valve choice, knowing that all was to be put on hold.

We're not alone - I'm fortunate in being able to work from home, which also distracts me from worry about 'the Ops.

Stay strong, stay in touch with surgeon's secretary.

Steve

Thank you Steve

I think I need to get back to work as sadly I feel this will be along wait! It’s trying to get your head round having had a really scary diagnosis, being told it’s urgent & no question about not having it done & then realising it’s not going to happen anytime soon.... just feel like you want to forget you even got told!!

Take good care... so good to share concerns with others who understand completely how you feel

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