I was diagnosed with heart failure in December of last year and told I needed Mitral Valve surgery in March. Still waiting for appointment and while I completely understand the problems NHS staff are facing, it is beginning to stress me more by the day. Still managing to work thankfully but living a life of work and sleep.
Anybody else had a similar issue?
How did you manage?
Hi do you know if the actual referral has been made? sometimes the doctor makes the decision but the admin doesn’t get done.
Worth a call to check your definitively in the queue. Might be able to tell you current waiting time. Knowing doesn’t make it sooner but helps manage the wait sometimes. The unknown causes more stress and anxiety.
👍
Thank you, yes definitely referred and on the list. I’ve made monthly calls to my consultant’s secretary who is very helpful but still no date. Finding I’ve become obsessive about it now and looking for other people’s experience.
Appreciate your response.
You’re certainly not alone, felt the same, it is hard to relax about it.
I was diagnosed with mild mitral valve 10 years ago but was reassured it was fine. Awaiting to see doc about possible heart or copd
Thank you, I think going from assuming my symptoms were menopausal to heart failure to a waiting list within weeks has been part of my problem. I’m sure it is worse in many ways having it on your mind for 10 years but equally I think I have been expecting this to happen quickly from day one. It’s kind of you to reply. I just needed to chat to people who understand today. Thanks x
It is hard to wait for your appointment. It will happen. In the meantime try (I know it is hard) not to stress too much.
Thank you
Try not to stress too much (easier said than done I know) and hoping you hear something about it real soon.
Thank you so much
It's the hardest part waiting If you feel you are getting worse though ring the secretary and get her to let Doc know as that may push you up the list . It will happen
Good morning. I waited 9 months and in that time had cancellations whilst being gowned and waiting for theatre . I originally went to see the doctor with what I thought were thyroid problems and got the shock of my life to find out about my heart and valve problems. I am a year post surgery now but remember only too well the wait beforehand and the cancellations made it all the more worrying. Have you put yourself onto the cancellation list? Do what you are currently doing and keep phoning. Having been where you are I know what you feel like so if you want to private message at any time please do that. I really hope you get called in soon....until then, keep on at them earlier on a regular basis. X
I really appreciate your response. I can’t imagine how awful it must be to be gowned and have a cancellation. You obviously waited a similar time to me. I might take you up on the DM. I did ask for a cancellation way back in May. I was the same, age 50 check up. Never expected the blood test to show that!
How are you feeling post surgery? Hope you’re back to full fitness!
Hi....I was strangely extremely calm on the morning of my actual op but didn't actually believe I was having it done until they got me into theatre. Lol. I feel great in myself since my op...have some ongoing problems with mobility but I'm working hard on that . I do daily exercise and try to keep as fit as I can and generally can't complain at all in view of how some people suffer. Please do PM me anytime if you want to....only too pleased to help anyone in the same situation as I was. Take care x
Think it’s really helpful to hear from someone who is at the other side. Thanks for sharing.
You are welcome. Anything I can help with....i completely understand all the worries etc. Xx
You could try ringing PALS to ask what the waiting time is. That's what I did when my follow up appointment, which the consultant told me would be in 3 months, hadn't materialised after 6 months. I still ended up waiting 14 and 1/2 months.
Thanks that is good advice. I think that I’ll probably end up that long as I’m on ten months already.
Hi. I saw my cardiologist consultant last December and I was in for a new mitral valve in January. I can only assume that yours isn’t too bad yet but I agree the waiting is stressful. Ask the secretary if she can give an idea. Like 6 months or more than a year?
I was told it was urgent in February and that if they could operate quickly they could probably repair not replace. We shall wait and see. That was very quick. My Dad was the same but it was pre-Covid.
If you are able to, have you told them you will take a cancellation? I did and was lucky, I was called up with 2 weeks notice.
🤞
yet again it looks like a post code lottery.
I had my leaky valve monitored for 15 years before it was deemed necessary to perform surgery (mechanical replacement). Try not to worry too much, not easy I know.
Thank you
Hi I have heart issues been up A and E three times recently,was told I'd been referred to AF clinic and would be contacted in two weeks not heard a word, think mine is also different as I spent a year having tests scans etc and they found nothing then 8 months later told I have EF arrythmia,I feel they saw my name and thought we have discharged him I'm not getting him back in a hurry while I struggleI'm actually thinking of taking legal action when I do get seen
Me to Told I’d be seen by a AF doctor 6 months ago and not a word I only just discovered my Gp didn’t even No about this because he didn’t have anything sent from the hospital I had to go and get the report myself and bring it back to the surgery Found out also 3 years ago my report from pre op was never sent to my GP and chased it to Essex where it had been put in storage When I got it I have 3 valves with regurgitation and 2 chamber severely enlarged My GP just said I will get this in the system and still waiting for ECO I used to wait for the post man but don’t bother now
That's dreadful you have had to go to that extreme,really shocked hope you have kept a record of all this ,I feel angry for you ,what a complete joke
If your symptoms have got worse, ring his secretary and ask for a cancellation or at least find out how far down the list you are. Tell her how it's affecting you.
I don’t know whether I feel calmer that I’m not alone or just frustrated in everybody’s behalf. Think there should be an approximate time given for surgery. Would help manage expectations. Been thinking it would happen in May from initial conversation. Had I been told a year or more might have felt differently, perhaps not.
Feels like life is on hold as I’m sure it does for everyone. Thanks all for sharing your experiences. A lot to be said for open discussion.
Take care x
Same with my husband , we ve finally got an appointment for arrhythmia clinic four months after stroke caused by AF . The wait is so frustrating as we constantly worrying about the state of his heart or if it’s deteriorated since . What type of heart failure do you have my husbands left ventricle is running at 33%
Regards Jackie
Only mitral valve at the moment. Severe regurgitation but clear arteries (or they were 7 months ago).
Such a worry. Having been through similar with my dad, I honestly think some aspects are more difficult for the family than the patient!
Yes it is so stressful x
As a mitral valve patient myself - at moderate regurgitation stage currently - just wanted to say, totally understand your worry and frustration. İ personally would contact my MP and explain my position. They should be able to help you by getting some idea of when your surgery is. İt is not about complaining or ranting. İn my view, they need to hear stories from real people. Simply ask him/her how they would feel knowing they had a serious heart problem but not knowing when it was going to be operated on, fearing every day how much it is worsening and worried while waiting they could just simply drop down dead! That is how I would feel. Obviously as people have said, you are probably waiting as there are more serious cases. But the delays are unacceptable and more should be being done. Fingers well and truly crossed that you get your op soon. İn the meantime, try and treat yourself, new walking gear for after the op? Put your favourite comedy programmes on? Walk by the sea? Wishing you all the best x
Thank you, yes I am trying to plan a survivors holiday for next year! It was easier to be positive in May than it is now!
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