Moderate mitral valve regurgitation/prolapse

[Dossaleeds]

Hi, everyone. I just thought I would post as I know I found this forum really helpful when I was first diagnosed with moderate mitral valve regurgitation back in April.

My short history - I suddenly felt ill at work and thought I was going to pass out. Room spinning, dizzy. I had no other symptoms. When I went to the GP he could hear a heart murmur straight away and I had an echocardiogram to confirm that I had moderate mitral valve regurgitation. My GP told me not to worry but that I couldn’t do any exercise until I had seen the cardiologist. This was the bit that scared me the most.

I then had to wait nearly 5 months to see a cardiologist. I had the appointment this week. Unfortunately, the hospitals where I had the echocardiogram and the one where I had the cardiologist appointment were not on the same computer system, despite both being NHS and only a couple of miles away from each other, so the consultant couldn’t see the pictures of the echocardiogram. He could, however, read the report from the first hospital.

The good news was that the cardiologist said there were no restrictions for someone with my condition - moderate mitral valve regurgitation.

I think this was partly because he could see that my heart was a normal size (I.e. not becoming enlarged from the extra strain of MVR) from the report.

He didn’t offer any dietary advice etc and said I could exercise again. The only thing he added was that he “probably wouldn’t recommend an iron man competition”. He said that as the MVR was moderate, it made sense that I could do moderate exercise. He also said that he had other patients on his books that were still running marathons.

The cardiologist was very clear in his advice. He confirmed that with MVR at my age (44), it was almost certain that I would need a heart valve repair operation sometime in the next 2 to 15 years. I’m scheduled to have another echocardiogram in six months (so they have one on their hospital systems) and then follow-up monitoring checks every year.

The cardiologist felt that I should be symptom free at my stage of MVR so said my funny turn at work was probably unrelated. The main symptom for MVR he said was breathlessness and that some people wouldn’t even have this symptom before needing an op.

I guess my takeaway from the appointment is that when I’m thinking of my heart health, I need to start saying “I’m OK for now” rather than thinking long term and what operations I might need.

I know that’s a long message but hopefully it will help people in a similar position to mine, especially when you’re waiting for further advice from a consultant.

[Yumz199725]

Hi DossaleedsDefinitely helps me im in a similar situation just a different valve I have bicuspid aortic valve and severe aortic regurgitation and moderate stenosis so I will eventually need valve replacement surgery. I agree that every funny turn makes you immediately think the worst I do all the time when I have dizzy spells and unsteadiness, breathlessness anything that seems heart related but then I get reassured by the hospital that it's not. I had a funny turn in June I stood up after eating my lunch and felt so dizzy and pain in my arm went to A&E wasnt anything to be concerned about thank goodness. Thats really reassuring that your Mitral valve is moderate it means you won't need the operation for a while but they will see you every year. I recently had an echo, holter monitor and I'm having CMR on 11th, will get results in November when I speak to my consultant. Thats also really good you can still exercise! 😅😊. I joined a gym in March and I asked my consultant about it whether it would be ok and they said that it was a great idea and that aslong as I eat and drink before hand and only do cardio like a bike and treadmill that's fine and that I can't lift weights of any kind because it would raise my blood pressure too much which they don't want obviously. There's a really good face book group for people waiting for valve replacement surgery or who have had it I think you would definitely benefit joining it there so lovely and supportive and give great advice and suggestions I will find the name of it for you and I will get back to you! 😅.

Take care and keep us updated on your progress and appointments x

[Mumthree in reply to Yumz199725]

This is honestly so reassuring . I have just been diagnosed with mild to moderate MVR as a 57year old who is very fit - picked up by a routine blood pressure check which came back high . My consultant was rather dismissive and told me very little other than go away , take Ramipril , and see you annually - oh and at some point you will need surgery . I like to know timelines and detail so actually need re-educating to think “ I’m ok for now “ and this forum is very helpful . Thankyou

[Yumz199725 in reply to Mumthree]

Ah I'm so glad I could help. Hopefully because it's mild to moderate means you don't have any symptoms yet? I initially thought mine was severe aortic regurgitation but have been told recently by my consultant that it's moderate to severe aortic regurgitation and moderate stenosis so I won't need surgery to replace the valve for a very long time which is definitely reassuring as it was worrying me so much 😰. Sorry they weren't more understanding and told you anything other then come back in a year! Typical 😔. If there's anything else you wanna chat about just message me x

[Yumz199725]

It's called UK AORTIC AND HEART DEFECTS PRESURGERY POST SURGERY. 😊😅😉 X

[Dossaleeds in reply to Yumz199725]

Thanks for sharing the Facebook group. I’ll take a look. Good luck with everything.

[Mitchum]

I was first diagnosed with a leaky mitral valve 40 years ago, probably as a result of Rheumatic fever in childhood. I lived my life as normal for another twenty years ie; Eating, drinking, working, weight training and marital pleasures, having an annual check up until 2003 when it changed from moderate to severe. I looked ill, felt ill and got breathless very easily. Tomorrow is the twentieth anniversary of my valve re-placement with a mechanical substitute! The surgeon was hoping to do a repair but found there was little left of it to repair. Consequently I now need to take Warfarin forever and monitor my INR, which in my case has a range of 3-4.

Now, at the age of 75, I still live my life as normal doing everything mentioned above, except for the working bit and the fact that I need to "keep an eye on myself"! So long as you are monitored (in my case annually) you will be fine. Carry on living! If you have any concerns you can message me at anytime my friend.

[Dossaleeds]

What a great reply, Mitchum. It’s really reassuring to hear from people like yourself, who have had a long period without needing an operation. Thanks for sharing this.

[ILF1]

Thanks for your message - I can go down the road of what treatment, operations etc I might need instead of thinking of where I am now. You have reminded me to think of the “now” Thank you, wishing you good health and enjoy your “now”.