so last week was told I have mitral valve regurgitation.
I’m 41, don’t smoke hardly drink, though I have glaucoma and enlarged prostate, along with bad anxiety, I tend to be a little lazy.
I still don’t think I’ve been able to get my head round it. I just keep on thinking I’m being robbed off a future with my amazing girlfriend. my time is up before I’m 70.
the amount of times I have spoken to my GP and said I have high blood pressure and they’ve done nothing about it-so many what ifs?
Can’t help feeling a little bit cheated somehow, I’m scared but I’m raging!
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Blindbeggar83
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I suspect that the fear and rage which you describe are both actually more destructive than your medical condition. Regurgitation is a matter of degree, many people have trace regurgitation which requires no treatment. Is your regurgitation mild, moderate or severe?Can you improve your health through lifestyle changes. Self agency can only be helpful.
I am sure there are lifestyle improvements which will be useful in helping your situation. Choose from diet, exercise especially if you think you are lazy, and body weight management, although you say you don't smoke and hardly drink which are the other two that usually make up the 'set'. Look through the recommendations on the BHF site, and take control where you are able. But if you need to talk to a health professional other than the GP try the BHF Heart Helpline nurse who is qualified to give a medical opinion.
I also have anxiety, co-morbid with clinical depression. I didn't actually take the news that badly as I couldn't imagine making it to 60 anyway (let alone 70).
Funny thing is, I'm now approaching 61 and I've never felt better. My post-op ticker is operating well, I'm getting on well enough with warfarin, and my antidepressants are giving me significant relief. Heck, I think I might even go for 80....
At 66 ,v fit never smoked, <6 units a week alcohol exercised all my life not overweight no high BP , I found out I had severe mitral valve regurgitation which has resulted in me having double valve surgery. 6 months on I walked 5 miles on Sat last bit against the 50 mph gusts of wind. There is life after surgery. I was angry that my body had betrayed me . And worried. It takes time to get your head around these things so I don't think your anger is unusual.
But as others have said unless the regurgitation is severe you'll probably be put on a watching brief.
In the meantime do your best to optimise your health.
Hi I've got bav ( bicuspid aortic value and mild regurgitation) I'm on losartan for my blood pressure. Only got told I've got it 5 months ago I have alot of anxiety because of it
A doctor once mentioned something about a heart murmur to me at 41 and I asked if it was serious they said probably not and I completely forgot about it , ( had other things going on) my very young neighbour now has mild mitral valve regurgitation which you would never know and she has just been monitored over the years .
Looking back i probably had mild Mitral valve regurgitation then, roll on 20 years and I was as shocked as you to be told I had severe mitral valve regurgitation and needed open heart surgery.
It took a while to get my head around it but for the first time I had talking therapy which consisted of CBT and I threw my self into doing everything I could to improve my situation from diet to managing stress , improving sleep and daily exercise which gave me a focus .
I had surgery in July which wasn’t as bad as I feared and here I am at 62 feeling so much better , doing the cardio rehab, walking every day , swimming and looking forward to starting the gym and getting back to yoga, strangely enough I no longer have the anxiety I’d had for years so it looks like what doesn’t kill you makes you stronger and I’m certainly looking forward to living my best life and getting way past 80 .
This could be me. I had exactly same situation. 30 years of mild murmer then a pacemaker in 2018 followed by OHS mitral valve repair in 2022. I still some regurgitation but it's a lot better than it was pre-surgery, where any moderate exercises left me breathless. I'm 66 and take every day as a bonus. Life is what it is, no point in doing the what-ifs. Just grab every moment
My Dad died in July 22 of heart failure after a six year battle against heart disease (he was in his80s). Knowing that my family had a history of valve disease I had been incredibly careful about my lifestyle since 2016 when I was in my late 40s but had never smoked, always exercised etc. I walked away from the cardiac dept saying thank goodness I never have to see this place again. Never did I suspect that 5 months later I would be diagnosed with severe mv disease and heart failure. I was told I needed urgent mitral valve replace or repair within 3 months. Clearly there is a genetic factor in this and people banging on about lifestyle changes is incredibly unhelpful when you have already been living a restricted life for that purpose for years.
My 3 month wait turned into 11 months and I finally had a repair op in January. I don’t think I realised how ill I had been. All the things I had put down to grief, menopause, busy life were obviously heart related.
I’m now almost 11 months post op. I walk up to 20 miles per day at the weekend. I’m back to working full time (was back to my regular 50 hours per week after 4 months), I’ve enjoyed holidays abroad BUT I’m with you, I did feel hard done by. I see overweight heavy smokers eating takeaways who are fine and I hear people ‘heart blaming’ clearly I brought this on myself by something I did or did not do.
You are not the problem, years from now they will find a gene that causes this. We are just the unlucky ones that were susceptible. Hopefully you will not need surgery for years but you will beat it and be on this forum to give support to the next person.
I have not been seen since my post op in May but they told me my valve was successfully repaired so hoping it is! Please feel free to reach out if I can help. Those early days of waiting are the worst.
It depends on how severe you regurgitation is as to whether they will operate. As people have mentioned....the shock is perfectly normal but so many of us are still here and getting on with life after the operation . It's an operation that seems massive when you are faced with it but one that is carried out frequently and that has a very high success rate with good post operative results . I know you will get plenty of reassurance from people on the forum who will also be great support should you need surgery xx
I understand how you're feeling. When I was a kid, I had Hodgkins Disease and underwent chemo and radiation. I had no idea that a treatment that I needed to take to save my life would cause me medical problems 30 years down the road.In 2014, I discovered that I had mitral valve stenosis caused by the radiation I took as a kid. I was angry, hurt, dumbfounded. After numerous tests, the cardiac surgeon told me that it wasn't severe enough to warrant any surgical action, now. He said it might stay that way and not need anything done, or I might have to have it replaced down the road. I have to have it checked every few years. So I always feel like I have that hanging over my head.
But I finally realized that if I have to have it done to live a comfortable, healthy life, so be it. And they have several less invasive surgical options now, that you don't necessarily have to have an open chest surgery that takes a much longer recovery time.
So just because you have this diagnosis doesn't mean you can't have a long, happy life!
absolutely poleaxed when diagnosed your reaction is completely normal. Good thing is that you have been diagnosed so that your condition can be monitored and if necessary fixed by an operation if the regurgitation worsens. My regurgitation was initially mild and only now seven years on has reached the stage when I need an operation The cardiac surgery units are really good. It can be many many years before you need an operation so you need to try to not let it take over your life however hard it is. Best wishes Lexi
Yep, I totally get where you are coming from too - definitely angry and scared of what the future holds. I have always looked after myself - slim, non-smoker, occasional drinker etc etc. Yet four years ago I was horrified to be diagnosed with mild/moderate mitral valve regurgitation at 54 as a result of a childhood illness that I didn't know I had even had. I now (unusually) have three valves leaking and pulmonary hypertension... Welcome to the emotional rollercoaster! It really affects your head and whilst the doctors say it's nothing to worry about till it gets to the serious stage (and they're right), that is easier said than done. Having said all that, worrying gets you absolutely nowhere and just wastes your life. It might take years and years to get worse. The worry never totally goes away. You just need to manage it. I was so upset initially for months and months. It wasn't worth it. It didn't change anything. Enjoy your life now with your amazing girlfriend. None of us know what the future holds.I am writing this from a hotel room in Qatar having just done a cruise which started in Mauritius. Focus on enjoying yourself now. All the best.
Since I was young I have had a heart murmur but it caused no problems for decades, just monitored after I got into my forties. Both of my parents ended up with open heart surgery for aortic valve malfunction, my mom also had an aortic aneurysm repaired at the same time as her valve. Dad lived another 20+ years and likely would still be around but started refusing to take the diuretic he needed and went into heart failure. Mom is still around 30 years later despite the fact she was a heavy smoker up to the surgery and now is on oxygen 24/7 for emphysema.. In 2023 I was on Ramipril for high BP and started having fatigue, blurred vision and shortness of breath. I went off it and things improved for a while then got severe again. Ended up in emergency and was found to have severe aortic stenosis and needed the valve replaced ASAP. Don't know whether the Ramipril exacerbated the problem or caused it but I'd never go on that again. Had a TAVR done in January of this year and felt great the moment I woke up and have had no problems since then.
If your GP is refusing to do anything about your hypertension then you need a new doctor.
Hi there, Thanks for sharing your very interesting history . It is very well known about the nasty side effects of Ramipril because they belong to class of drug called ACE inhibitor notably troublesome cough and sometimes breathlessness. That is why they were replaced by Angiotensin Blocker like Losartan which is much safer. Glad you are so much better. Regards.
Hi there, What's your reading of your blood pressure. Mitral regurgitation and high BP are 2 different issues. It's important to have your BP stabilised before you are going for operative treatment of your defective valve. Regards.
Mine was 130-140/80, and my GP said they wouldn't recommend medication at that level. Just something to watch in case it went higher.
After surgery I was put on bisoprolol to help the heart heal, which has dropped it to 110/70. I'm not entirely sure if the beta blocker is just for 6 months or a year, or if I'll stay on it for good.
Personally, I'll be opening a new bottle of Spiced Rum tonight and having a couple of Rum Snatches (Ginger with a dash of lime). Same tomorrow unless I have a few bottles of lager.
Hi, I've done the full range of emotions at various times, including anger, cheated, hope, exilleration, despair and feeling lucky. To me heart related problems are just life. I'm congenital, born with a defect and started very young, with my family turning down surgery as an infant (probably the best decision in the early 60's). I had my first Aortic Valve Replacement at 33years old and I'm now onto my 3rd AV along with a Mitral Valve replacement and subsequent repair. Both my Aortic and Mitral Valves have mild-regurgitation since the day they were fitted 11 years ago.
I think being congenital and being in the system for so long, probably gives me a different perspective to most people. I dont fear surgery, and I take the view that if it's needed, so be it. I also believe its better to have surgery earlier rather than have it hanging round your neck for god knows how many years. One thing for certain, it's never held me back in my approach to life, but I've never been scared of my shadow and take things as they come. I always will.
For yourself, I can imagine your anger, however, in my experience there's no need to doubt that you cant have a normal life. Don't let yourself cause unnecessary problems.
good advice. Il try and change my outlook. Don’t know if it’s me being too dramatic, I’m a hypochondriac as it is, but it feels like a death sentence. And I know there are people worse off, it’s just a feeling of dread I can’t shift.
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