I'm 44 and have severe mitral regurgitation. The NHS check ups told me it would be 'a long way down the road ' before there was a surgical intervention. But I paid for a private consultation with a cardiologist who referred me for surgery, via the NHS pathway. (I would recommend this for anyone that can do it and doesnt want to wait or cant speak to an NHS cardiologist).
My question is , if you've been referred for surgery with the NHS what kind of waiting times did you experience? I dont have any arythmias or chest pains or significant symptoms. I think they want to do it because of my age, before any permanent damage occurs with my heart.
Any feedback welcomed, in a way im just offloading because not a lot of people I know understand being in this situation. :/
Thank you.
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SoulSprout
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It will probably depend on your symptoms and where you live (although in an ideal world it shouldn't). I had been having scans for years on my AV and on my last one in April 24 I was told my valve was slightly worse but nothing to worry about. I had no symptoms apart from it was picked up by a Dr with a stethoscope. Unfortunately something changed after about 4 months and I had shortness of breath and chest pain from exertion and I was kept at my local hospital for 10 days before being moved to Bristol for my operation. I had been working 6 days a week in a physical job and had an active home life up until then. They tell me after 6 months I will feel better than before.
Hello, my partner was diagnosed with moderate/severe mitral regurgitation in December 2022, by April 2023 it was severe so he was referred for OH surgery which was first scheduled for Nov 2023 then cancelled and took place in January 2024.
My op was a "challenging" according to my surgeon but then he might say that to everybody. I was in hospital for 2 weeks and had pneumonia as well. Obviously a bit sore and tired but stated walking and by 4 weeks post op was doing 1/2 mile without any problem. By week 6 was walking 2 miles. Then I picked up a cold virus thing which left me exhausted for weeks. Since then I seem to always have something, I think I was fitter at 6 weeks than I am now at 15 weeks. I'm sure this is not the case for everybody and I'm just a bit despondent because I used to be a relatively fit and active 61 yr old.
Thanks for replying. Sorry that it’s been so challenging for you. Keep up the effort, it probably feels worse because of the viruses. I constantly feel drained like I’ve got the flu or something. I hope once I’m fixed I’ll feel better.
I hope once you shake of the other bugs you feel much better.
I'm a bit older than you at 65. I was diagnosed with severe mitral regurgitation last February with previously no symptoms, until one night I woke up with my heart beating ten to the dozen. A and E followed by various tests over the coming weeks discovered the leaking mitral valve plus AF. Was told it would be a 3/6 month wait for surgery, which was the worst part. It actually took around 4 months but seemed like a lifetime when you're waiting. I was fit and healthy up until that night, or so I thought. Just had an echocardiogram and 24hr ecg. The valve repair is good, am still in AF as the ablation didn't work. Walking 4 miles a day but must admit I struggle on inclines.
I think I was fortunate because I only went to the doctor because of some PVCs. I just felt something wasn’t right. But GP referred me for a scan. Suppose I can only look at the positive if I’d got to 65 my heart might have all kind of problems by then. Hope your AF gets resolved. Thanks for taking the time to reply. You’re right about the wait. As soon as I found out i just want it done rather than the anxiety of waiting : /
I have severe aortic regurgitation (among other things) not mitral. Time runs from when you are on the surgeons list. I was told 3-6 months by the surgeon and am now at 3 and a half months but no date yet. Waiting times vary fromNHS hospital to hospital and are dynamic so you can be bumped up the list if symptoms worsen. My hospital monitors symptoms via an app and I have to record symptoms each week. I was told that when I have a date the hospital would call on the day to make sure there is an intensive care bed available . Also cancellations on the day are possible if there is a very urgent case Lexi
thanks for replying. What symptoms do you have? do you mind if I ask how old you are? The difficult thing for me is I just feel fatigued all the time and no one takes it seriously because they can’t see anything wrong with me : / Nobody want heart surgery but I just want to get it out of the way now I know its inevitable
Hi soul sprout just realised that your question was for me. Until recently I had no symptoms and was very active running gymn swimming but over the last few months have been increasingly tired and less active. Have reached the stage I really want the operation over with . Hope that you get a date for yours soo n Lexi
Thanks for replying again. Well I feel exhausted all the time. I was also very active but the best way to describe how I feel is like my muscles feel like when you have the flu. just totally no energy at all. It's hard to explain it to someone who doesnt know what it actually feels like because they just seem to think ' oh youre just tired'. I'm sure you know what I mean! I'm fairly recently referred so I suspect it will take a while. Although in my area waiting times are quoted at around 18 weeks. Just have to see what happens. Hope you don't have to wait too much longer
Hi, I had mitral valve replacement in November last year following a consultation in June. Ironically I was offered the surgery at end of September but had broken my shoulder a couple of weeks before so had to wait for that to mend first. Hopefully you won't have to wait too long. Hope this helps and good luck.
Thank you, sorry about your shoulder, I’ve broken a collar bone so I know how awkward and painful an injury to that part of your body is! Hope your recovery went and has remained well
Hi. Plenty of good answers here already, but thought I'd respond as I had the same diagnosis at a similar age to you (45 in my case). I too was seen privately by a cardiologist - on the recommendation of my GP - and then had surgery on the NHS. I was told I'd need surgery in March 2020, had it in Nov 2020. That was the COVID year, so I got cancelled a few times due to lack of ICU beds. I was told it would have been more like 3-4 months normally. Like you I didn't have any major symptoms but they thought it a good idea to do the surgery whilst I was young and healthy. Just turned 50 last month and all good. Hope all goes well for you.
Thanks for replying I really appreciate it. from what everyone has said maybe it might happen this year then. but scary! I hope it all went well for you and that you have or are recovering well
I got to severe 8 to 10 years ago, but my surgeon recommended waiting till I was symptomatic or my heart showed LVH. Never had any symptoms, but showed LVH summer 2024.
I’m on the Irish private system, so the wait was just a matter of scheduling. Had mitral valve repair and aortic valve replacement Sept 2024. I’d say I’m about 95% recovered at this point.
Thanks for replying. Hopefully I won’t have to wait 10 years! I think my NHS team thought that initially until my private cardiologist referred me.
I hope you’re feeling well following your recovery. It seems like a lot to get done at once. I suppose I should be grateful that my other valves are ok!
The wait is at times unbearable, and yet here we are 6 months on from my op and time has flown by. Do you have an app to monitor your symptoms, I had one and had to report every two weeks so they could keep an eye in things. The fatigue you talk about is awful. I went from working full time as a gardener to struggling to walk to the end of my path. Once they sorted the meds out things improved a bit, but I had to stop work. I'd been thinking of retiring soon, this just helped me make my mind up. What did surprise me is the amount of people who have heart surgery, when I got to Barts to have mine I couldn't believe the amount they get through in a week. Hope you get sorted soon, good luck.
I don’t really have any significant symptoms. (That they consider significant). They seem to only care about shortness of breath. But the fatigue is they don’t seem to take seriously or consider it as clinically significant. but for me that’s the worst part. I use an Apple Watch as my main monitoring. I don’t have anything provided by hospital. I mainly rely on it to monitor my heart rate and detect AF if it happens and it has an ecg for basic recording if I get palpitations. But that’s all my own stuff really. The NHS haven’t been a lot of help, apart from my GP who thankfully took me seriously despite me having very little symptoms.
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