Hello everybody this is my first time on here and the support I’ve seen from every body has been wonderful . I was diagnosed in March 2023 with AF and a leaky mitral heart valve prolapse which I was told would need open heart surgery for ideally in 3 months-after hearing nothing I rang in August and it seemed obvious the referral hadn’t been done but was referred that day I rang.
I’ve still not heard about a date for surgery and as symptom worsened I emailed the consultants secretary but had no reply and I understand my doctor wrote a letter as a matter of urgency too then I was admitted to hospital where they rang to chase up my surgery only to find I wasn’t on any list they have sent another referral letter but I’ve heard no more so where does that leave me now and is this the ‘norm’ with everybody else’s experiences or have I just been unlucky?
Thank you for reading 😊
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Bluedolphin123
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No that’s not the normal. But the delays and chaos are increasing. By far the worst part of OHS is the waiting. To be admitted then sent home is the pits.
maybe your GP could unravel the chaos. He will at least be aware of just where the bottleneck is stuck.
I found that, once the consultant saw my scans she acted very fast, even ringing from her home to tell me where I stood.
I can’t grasp how you got admitted without a clear chain in place.
I would love to hear that you have simply been delayed for a few days due to emergency’s of new patients. And then you get called in very soon. Maybe your GP will unravel for you.
Perhaps your pre op tests have been confused with your op. I luckily had these tests as an inpatient, but I believe this is rare. The normal is to go for the tests as an outpatient. Then go as an in-house patient for the op.
Thank you for taking the time to reply . I wasn’t very clear sorry, I wasn’t admitted into hospital to have the operation but by my doctor who was concerned by my symptoms so they arranged for me to go to hospital where they were monitoring me on the cardiology ward for a few days .
I am sorry to hear how you have been let down and no I would not say this is the morm at all
You could complain to Pals not that it will reverse what has happened but they should look into this and hopefully lessons will be learnt so this does not happen to anyone else
Personally if this was me I would be chasing it up every week , making a phone call and sending an email to them asking for some kind of clarification that you have been referred and what waiting time you are looking at that way if they let you down again you at least have prove how many times you contacted them and hopefully they will get fed up of you contacting them and acknowledge you
Thank you for taking the time to reply and for your advice which I’ll be implementing 😊
On reflection not wanting to be pushy I definitely sat back last year until August waiting for contact with a surgery date which as I now know was the wrong thing to do .
4 days was a dream. I’m home and doing ok. Trying to be patient about everything I can’t do yet and not freak out about small issues but the wait for op was the worst. I’ve always been an optimist but that wait doesn’t make optimism easy.
So pleased to hear that your home and doing ok after such an operation, I’m sure it’s one day at a time but sounds like your doing well and hopefully well on your way to enjoying a summer this year 😊
Take care and I’d love to hear how you are getting on over the coming months .
Hello hope you are doing ok , It must be coming up for a month since you have had your surgery so I’m hoping you are starting to feel more comfortable x
Progress is slow but noticeable. I think I’d focussed on the op for the year I was waiting and not wanted to tempt fate by considering the recovery.
Getting in and out of bed, off a chair etc is so much easier now. Exercise is slowly improving but still only able to walk for about 12 minutes- had hoped for more.
Wound has been a bit iffy but most of it is beginning to heal now.
I can prepare a sandwich and get up and down stairs without problem now. The best thing I have done is buy a travel kettle so that I can easily make hot drinks without relying on other people.
Still sleeping sitting up and my sleep is so much shorter than usual. I appreciate that I’m probably not doing enough to need it but all the literature suggests that you will sleep for hours!
We spend such a long time and energy waiting for the operation that it is hard to imagine the recovery afterwards but well done It sounds like your doing really good despite it being such early days but little steps every day make such a difference to your recovery week by week .
I’m doing okay but ended up in hospital during February due to so many dizzy spells but maybe it will chase things up a bit my end 🤞
Those dizzy spells are shocking. You just feel panicked and off kilter and mine were never hospital worthy so I can’t imagine how bad yours were. Your entire life is on hold. I hope you get your date soon. Keep in touch.
That explains it so well ,it’s so hard to put it all into words but they started happening daily and with the vision disturbances and feeling like your going to pass out it was so scary - they upped my Bisoprolol to 10 mg which seems a lot compared to what every one else seems to have on here but it has helped .
We all seemed to have had that wait for a year or more despite being told hopefully 3 months and your right that your entire life is on hold.
There is now a section for hospital waiting lists. You will then be able to check you are on the list and an estimated op date.
Take it with a pinch of salt though... mine shows I went onto the list mid November and my CABG should happen in January 2024, its now mid February and I'm still waiting🤨
I don't have any direct experience of waiting for heart surgery but in the hospital in my area the admin is chaotic. It took over 8 weeks from referral to me getting a letter to book an appointnent for a different specialism, out of 5 cardiac related tests over a 2 year period 4 lots of results were not received. As I said, chaotic.
Hi. I had the same problems. Saw surgeon on 10 August last year and he showed me the echocardiogram and said it was severe and needed doing. So we asked the big question - WHEN. He said he no longer had really any say in waiting lists. It was all done centrally. He said it could be 6-12 months. We were shocked given the severity of the situation. We came away very disillusioned with the NHS. I had paid into this club for decades and now when I needed it urgently it let me down. I could be dead before I got my operation. We had seen lots of reports of how much this operation cost privately but we thought we would enquire anyway. We were both shocked and surprised. We discussed it and somehow found the money. I had the operation on 26 august - 16 DAYS after being told 6-12 months
After the operation the surgeon said my heart was worse than he’d thought it was. Am doing fine now. Recovery was brilliant but remember it takes time. One day at a time. You will get there. Keep us updated.
Wow I get where you coming from , the cost is so much for heart surgery and I’m so glad you took the quick decision to look at having it done privately, even that was so so fast it’s unbelievable.
The cost is so much especially for heart surgery but it does make me feel in the future this is how it may have to be as there isn’t always going to be a choice.
I’m pleased to hear that you are now doing well
Do you mind saying where you chose to have your operation?
Telephone the appointments office at your hospital - they will be able to confirm that you are on the waiting list for an appointment and how long the wait will be. Also ring the consultant's secretary to ask the same.
I tried in December and it was an answer phone saying the surgeons secretary had left, no one was manning the phone, someone may pass by and pick it up, leave a message and they would try get back to but have extreme staff shortages…
Thank you for your advice though and I will be ringing again 😊
Try going through the hospital switchboard, ask who is taking the calls for that surgeon, they usually have an alternative secretary. If not, be sneeky and phone a different surgeons secretary and ask them to find out what's happening. It's hard work nowadays trying to get answers 😔 !! Good luck & keep us updated.
Sady, it is very easy to get beguiled by what they tell us, to believe the timescales quoted and by the time you realise that nothing has happened, too long has passed. Not to mention they have overlooked to do what they say. We have to be proactive now to manage our own own case progression or we can get forgotten in the system.
I had OHS in Oct 2022, but my journey to there had taken from February 2021, which was when I went into my Doctors for a nurse appt and she tried my blood pressure and there was obviously something wrong, then had a 3 lead ECG and then the Doctor, who was actually really horrible to me, referred me to the Cardiac unit. Then I had to go for various tests at the local cardiac unit and then in June or July 2022 I was told I needed surgery.
Because mine was still during Covid, I actually didn't mind waiting, I just tried to slowly loose some weight before my operation in that time. I was in on a Wednesday and I was out the following Tuesday.
I've just read a comment regarding the notice period, mine was a week - the problem was my partner was overseas and had to come back a bit early - but he didn't mind, because we thought that might happen.😆
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