Hi All. It's my first time posting on here so I will give a bit of my background first. I'm 41 years old and was born with a congenital heart defect. I underwent open heart surgery at the age of two which left me with mild mitral regurgitation. Until 9 months ago I have lived an active life. About 9 months ago I started to notice I was slowing down, I became breathless when walking short distances, was exhausted all the time, my heart was racing and my fingers were turning blue when I was walking. Long story short, after many months of tests I underwent a TOE (7 weeks ago) and was informed that my mitral regurgitation is now severe and that is what has been causing my symptoms. Since having the test I have heard nothing from my cardiologist. My symptoms have worsened and I was taken to A&E by ambulance last week with severe chest pains. I have contacted my cardiologist and but had no response. Has anyone else been through this? I realise waiting lists are very long across the NHS. Any info would be greatly received.
Severe Mitral regurgitation - British Heart Fou...
Severe Mitral regurgitation
I was diagnosed with mild/moderate regurgitation 20 years ago. 10 years ago it had reached moderate/severe and my cardiologist sent me to a cardio-thoracic surgeon. Surgeon said he only recommended surgery when I was either symptomatic or starting to show LVH. I never became symptomatic but my echo showed LVH earlier this year and so I had both my mitral valve and aortic valve done 8 weeks ago.
What did they say in A&E?
I don't really know how the system works in the UK, but I'd be getting on to my cardiologist letting them know I wasn't happy with no response.
Good luck!
Thank you for the response A&E just said that my EKG results had improved while I was there and that my cardiologist would be in touch. I have emailed my cardiologist numerous times recently but yet to receive any response, good old NHS.
Yeah, my cardiologist is actually decent with email, but my (otherwise excellent) GP is useless with it. Pretty much have to use the phone.
I had a diagnosis of heart failure in December 2022. In February 2023 I was told it was severe my regurgitation and would need operating on urgently. I was told it would be approximately 3 months. I was operated on at the end of January this year. Progressively got worse and my kidneys and liver were struggling by this time last year but despite all my worries my outcome appears to have been good. I would phone every month from June onwards as I received no communication at all from GP or either hospital involved with my care. The waiting is frustrating and hard.
Good luck. Hope you’re contacted soon.
About 2 years ago, when my MVR (mitral valve regurgitation) went from moderate to severe, my cardiologist arranged for a transesophogeal echo to get a more precise view of my mitral valve. Following the TEE, I had a MitraClip inserted via my groin. Since then, my MVR has improved to mild-moderate. The alternative to the MitraClip would have been valve replacement and they don't like to do that on patients over 80 years old, I'm now 87. I'm active and mostly asymptomatic.
I'd phone the cardiologist's secretary if we're you.
What did the doctors in A&E do and say? At least they should prepare a treatment plan as an outpatient. Without treatment you will need to visit A&E again which is in no one's interest.
hello
I was told I needed surgery in 3 months with severe mitral regurgitation but nothing happened, referrals were not made then I was told I had been referred but heard nothing so after a year of patiently waiting and emails not responded to I saw the GP who got in touch with the consultant, ended up in A&E a couple of times and finally was admitted to hospital for a week where they discovered my referral hadn’t been received - after that I was finally heard but still took another 6 months so please don’t be like me and sit waiting quietly for a year x
That's shocking. I will definitely keep pushing them as the thought of being in this same position this time next year is not something I want x
Ask your GP to contact the cardiac consultant for you. Severe mitral regurgitation shouldn't be ignored and can lead to further problems if not treated or at least monitored. Either ask your GP or report to PALS at the hospital and tell them you are getting no replies from cardiology. They are usually really good at getting answers. Please be insistent and keep on with this. It shouldn't matter how busy a department is, being ignored isn't acceptable but it happens far too often now. Keep us posted and good luck. Xx
I would contact PALS rather than GP. I spoke to mine yesterday as I've been waiting since last October to hear about a referral. A second referral was done in Feb this year. GP has already sent two requests to hurry things up. He said in our area, cardiology are no longer acting on GP requests. They simply don't get a reply.
It's shocking isn't it? I only mentioned the GP because mine got an answer straight away from the cardiologist when he wanted a reply about my medications...I was very impressed but obviously understand that not everyone gets that response. I have to say that PALS were very good in responding and seem to be one department that are more on the ball at least. I hope you get your referral sorted soon. All the best xx
Thanks. Every dept here seems to be the same. 7 months since I rangthe pain consultant's secretary and not a word. It's some years since I used PALS and they were useless then. Took months for a reply saying they would investigate and even then I had to chase them up many times. A woman was supposed to help draft a formal complaint but I ended up having to write it as she had so many downright mistakes the shocking spelling and grammar. It them took 2 years to get a decision and for the hospital to change their policy.
Oo Eck...sounds like I got lucky!! It's disgraceful when things don't even get acknowledged. I worked in education and if I hadn't done my job properly at any time I'm sure there would have been uproar about it. Things generally now seem to be put in the 'cant be bothered' tray. Exasperating and scary for people waiting. Take care xx
Thank you. I will give PALS a try. It's very frustrating not knowing what's going on and getting no support from the very people who should be helping you.
It's so upsetting and frustrating. Be insistent with PALS. It really isn't good enough just to be ignored. Let us know how you get on. Take care xxx
i have the same things, but was told that this is due to my persistent high blood pressure. therefore, i must keep my blood pressure below 140/70.
I have very similar symptoms to yours and no doctor seems to give a toss because an echo I had done over a year ago now was 'ok', despite the fact it's clearly worsened since. Seems to be the state of things from where I am sitting.
All the echos I had done recently did not pick up the worsening of the regurgitation. It was only when I had a Transoesophageal Echocardiogram that the severe leak was spotted. You should keep pushing for more tests.
Thanks, I will. Seeing a doctor to discuss it on the 20th.
Hi.
I had my mitral valve repaired OHS end of February this year.
It was 2 days short of exactly a year wait from them telling me that i now needed the operation. For years i was moderate regurgitation, then told severe and needed to be sorted. 50 years old at the time.
Not as tho could afford it, did look at cost private think it was around 35k, told them would need sell a kidney to mend my heart at those prices.
9 months on feeling good.
My brother has severe MVR & at age 87 has been deemed too high risk for surgery. However, he was visited by a specialist cardiac nurse for several months who tweaked medication until his heart was back in normal rythym. He still finds it hard to walk on sloping ground of any kind without getting chest pain but has now been discharged from cardiology. He was referred to the excellent community cardiac team after being discharged from hospital - I suppose it is a case of first being seen & hope you cross this hurdle soon.
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